Wow, you guys rock my socks!!! I am so moved and humbled by reading all of your heartfelt comments about your own circumstances!!! I honestly would like to sit here and give thoughtful replies to everyone but I would be pushing myself beyond my limits but please know I have read and appreciated every single comment!!! Honestly, I am so humbled and feel sorry so many of us are struggling!! If you know anyone who may benefit from my video please share it with them, I would love for more people to get benefit. I agree these types of videos are so needed but I cant deny I was nervous about posting it. So so glad that its helped you xx
Penguin and Pear Dressmaking I’m sending it to my sister she’s healthy and try to push me to do more when I have none left.i hope she will understand by illness more thank u again and get some rest.
I can appreciate your nervousness and hesitation about posting the video, wondering how it would be received but so pleased you did. You will have given so many people with similar issues encouragement & those who are fit and well some appreciation of the what others have to deal with on a daily basis. Well done & make sure you keep well.
So glad that you have shared this experience with us. Started experiencing most of these same symptoms after a third post-cancer surgery, when all of a sudden I couldn't face getting out of bed most days. Things have improved quite a bit in the intervening 10 years, where some of it can be controlled via good food choices (as you mentioned), allowing myself to sleep when I need to instead of trying to stick to some artificial schedule, and generally forgiving myself for not getting things done as quickly as might normally be expected. I have also found Headspace useful to learn how to focus, in particular, when I get a bit breathless (as I noticed you did a few times when explaining how the illness affects you). Evidently, this is one of the lesser known symptoms and can be quite distressing. Your courage in working through all this and sharing it with us is so very appreciated -- thank you!
I also have ME and it was so comforting to watch this video and read the comments. I seem to have a formula for my sewing. Day one, I get the pattern ready. Either stick it together or trace it out. Day 2, I press the fabric and pin on the pattern, if I start to tire I cut it out roughly and sit down to cut it neatly. Day 3 I mark the pieces and apply interfacing. Days 4 onwards I start sewing, always aware of tiredness creeping up. I can usually do 2- 4 hours. This way I have a new dress in about a week. There 's no rush, I enjoy handsewing hems. We all need to learn to be kind to ourselves.
"no one died, did they" - sometimes we just need a little perspective! Most of your tips are completely useful for everyone, thank you for sharing them with all of us
I love your expression of nobody died. As a person in management I had 120 people to deal with and I used to say that to them . I would just go ahead and fix the errors and if they figured it out which they mostly did that's what I would say to them lol miss working actually but am retired
Thank you so much for this, Clare. I am nearly 72, have Fibromyalgia, severe spinal stenosis, and have had cancer with chemo and radiation leaving me with limits. I returned to sewing just over a year ago and get discouraged because of limits but also how much I have forgotten and how poor my sewing has become. You have given me a boost. I need the creative outlet and it is worth the effort to continue. The advice to not feel guilty really resonates, thank you. I have known these things but needed to hear them put together by someone who has been there. Hugs!
This is so useful. So many of us are trying to be superwomen. Now at 79 I hurt my back and have to rest and I run out of energy. I find myself comparing myself to others. If I go out with my hiking group it takes me a couple of days to recover. When I was healing and sitting in my chair I decided to sew which I had not done in years. Now I am making clothes I can wear. There has been a learning curve with knits and matching fabrics to patterns but I persevere. And thanks to channels like yours I am making progress. I think the pacing and resting is the things I need to put into practice more. Thanks Claire
Thank you. I find you such an inspiration. I was a nurse led a very busy active life. Now retired and the last 2 years I'll health and in constant pain have been a shock. Mentally I struggled. I have found sewing very therapeutic. I am lucky my hubby built me a sewing shed. So I can leave stuff out and do as much or as little as I like. The small ironing table was a revalation! I admire your mental attitude, although I am sure we don't see your bad days but as you say, friendship gets you through. I joined Rock choir and singing lifts my spirits. One of the sewing contestants is a rock choir member! She sings while she sews! But my Rockie mates have lifted me out of some dark days. Thanks for all the tips xx
This is great! I have fibromyalgia and already follow most of your suggestions. It is good to have a similar chronic condition tell their story so more people are aware of what we go through. Thank you.
You are right on. I have RA, fibromyalgia, and Sojourns.it is surprising how quickly the energy drains and how slowly your energy returns. I’ve been dealing with this for 20 yore now. I hide it for several years and NOW it has caught up to me. Thank you for being brave and speaking out.
I understand. I have been diagnosed with an autoimmune disease. At this time, my rheumatologist believes I have Sjogren’s Syndrome due to my symptoms of extremely dry eyes and mouth. This includes flares of extreme fatigue. I am learning to pace myself. Thanks for posting this. So many people, including former close friends, think it’s all in my head. Grrrrrr
Please please ignore those people, they're ill informed and ignorant. Sorry to hear you also have struggles. I hope the video helped you. Thinking of you x
Some of my friends thought that too, but then I told them that it was, since I have a BRAIN INJURY. I understand how frustrating it can be, I've never looked sick. People don't realize how much work it takes to not look dead. LOL! Hang in there.
I am so glad to find your vlog. I have always loved to sew but am disabled because of MS, fibromyalgia, sjogrens. I have begun to loose the use of my hands & your positive attitude is so uplifting. Giving myself permission to "do a bit then rest a bit" has been such a battle. I have also had to deal with doctors, family & others who repeated "it's all in your head til I thought I was crazy or even worse, lazy. Thank you for sharing.
Thank you! You are so honest and genuine. I started sewing to get away from the heavy thoughts. My mother and father are seriously ill and it consumed me. I was recently on knee surgery and I can say that no matter the pain, sewing helps to be in the moment, to feel successful.
Thank you for your take in this subject. 😩I have been battling FIBROMYALGIA for several years now and the chronic pain and other problems associated with it can and often wipe out weeks at a time. This is why I watch a lot of UA-cam. 🤗I have set up a lovely craftroom as I love papercraft as well as making most of my own clothes. Because I do lots of crafty makes an don't leave home often, I find that I don't need many clothes, so there is little to do on the sewing side of my crafts. 😣I also don't get to the shops much as the craft shops are all over an hour away from my home. I also will not buy anything online as it encourages the closure of retailers and it won't be long when we will be FORCED to only buy the rubbish that online stores want you to have and there will be no alternatives.😤 Sorry for my rant, but it is how I feel. Regards Christine 🙋♀️🇦🇺👍🏻
@Theloveis_sewnin! I was diagnosed 7years ago after waiting 10 years to get the tests. My heart goes out to anyone that has Fibroyagia because it is a very misunderstood condition. It is such a hard condition to live with, and even loved ones find it difficult to understand what is happening in our bodies at any given moment. I have found that giving up red meat and gluten has helped me a great deal to ease the pain of day-to-day living. Regards Christine 🙋♀️🇦🇺👍🏻
@Theloveis_sewnin! sorry, I forgot the sugar. Thank you Claire for reminding me about that. I am a diabetic, so I automatically just don't think about telling to leave it out. Regards Christine
You are fantastic! I shave ME, Fibromyalgia, hypothyroidism and Bipolar. I love sewing but the frustration of exhaustion really gets me down but listening to you and your takeaways, have already got me thinking about how to change things hopefully to make things easier and more fulfilling. Thank you so very much x
Claire, thank you so much for this excellent video. But for details, you accurately told my story. It feels good to know I am not fighting on my own through my daily challenges of pain and fatigue. Personally, I can't fully express my thanks to the wonderful UA-cam sewing vloggers, who I found during a long hospital stay, who lift my spirits every day. Thanks and best wishes.
Sorry to hear you have similar struggles but its so reassuring to hear your story and others like you. Im very glad my video and everyone's has helped x
you are so amazing Clare,I did find your video useful,i know people who push them selves beyond their limits and feel guilty if they cant complete the task,you speak so much common sense,thank you for your thought provoking video,i love your sew alongs and great tips ,take care of yourself Claire,you are my number one person to follow,
Thank you for your honesty. I have fibromyalgia and have to do exactly what you have been describing. It’s so frustrating but the more people talk about it you know you are not alone.🥰
Claire, I'm late watching this episode, but I wish I were right there beside you to give you a big hug! Thank you for taking the time and effort to cover this topic. I've been sewing since I was a young girl learning from my Mom who was a fantastic seamstress. I am now 64 years old and was diagnosed at the age of 49 with Multiple Sclerosis. Many of your symptoms of fatigue, brain fog, and cognitive disabilities are similar to those of us who have M.S. I had to give up sewing for several years because my small motor skills (hands) would not allow me to continue. Through much physical therapy I was able to regain the use of my hands and began sewing again. You are correct - the most important lesson, albeit the hardest one, is to LISTEN TO YOUR OWN BODY and take breaks. Learn to pace yourself! I'm now in a wheelchair and I've made peace with my body (certainly not the disease) and am able to live a more productive happier life just as you have. Sewing is my therapy. You, my friend, are an angel. 💗
Here I am lying on my bed watching this on my iPad because I’m too tired to get up and do anything. This is so encouraging I am glad you are making this video.
I knew we had a lot in common! I also had a near fatal car accident and have a brain injury and disabilities from a spiral femur fracture. It's so good to see someone like me doing so well. Thanks for this. I feel like you were speaking to me!
Hi Rhonda, sorry to hear what you are dealing with. I cant imagine being in a near fatal car accident with those injuries, esp on top of invisible illness. Youre so strong x
you are amazing-this has been really useful.The guilt for resting is a hard one. people in your life dont seem to understand the importance of so much rest and make you feel like you are just being lazy. Thank you for this.
Even as someone who doesn’t have chronic illness these steps are so helpful because every body is different ❤️ I’ve never been diagnosed with anything serious but I know that I came spend the entire day sewing because it does take a lot of work my neck and back and eyes definitely feel it the next day! I’ve learned to try and break it up or do it different ways. I enjoy having something to do with my hands so if it’s something small like mending a tear or something I’ll hand sew it while I work or while I watch a show or something. I’ve really come to enjoy doing small things like that and it’s also making me want to pick up knitting again for when I’m through my mending pile. Thank you so much for putting yourself out there and sharing your journey, I love that more and more people are doing this and I feel like it just makes the amazing sewing community that we have every better ❤️🌻
I was diagnosed with chronic fatigue in 2011. The pain that comes 's the most difficult b for me, burning and ache in hands and feet mostly. I have developed an aversion to food, the planning, shopping cooking, cleanup makes me tired just thinking about it. Consequently in last year have lost 30 pounds and look 20 yrs older. Therapist helping but a slow process. Sewing does bring me pleasure, thank you for this video and tips. The most helpful. Was to connect with social media to sewing communities. Keep putting one foot in front of others, and do what you can do each day. Don't forget your prayers for self and others.
This is an amazing video. I have U/C and was diagnosed after my 3rd child 34 years ago. They are all grown now and so am not making clothes as much. 3 years ago I had to finally retire as I just did not have the stamina to put in a full day. I have been a sewer all my life, cannot remember a time I did not sew but have recently finished a bookbinding certificate and until covid was starting to teach. I find the hardest thing for me is to sit and do nothing even though my body requires it, my husband says to rest, but my mind swirls around the quilts and books I am working on or the dust bunnies I know are hiding under the bed. I try to not feel guilty but as you say if it waits a day or a week or a month no one will die. Thank you for reinforcing what I know and reminding me that I do know it.
Clare, great video and such practical and good tips that will apply to so many people living with chronic medical conditions. In respect of my issues, I can relate so much to what you mention. I have had RA since I was 19 (turning 70 next mth) & lupus. In the last ten yrs COPD resulting in getting out of breathe even on the flat. I try to pace myself, but admit there are times I run on fast speed, then go down like a burst balloon. Used to sew a lot when in my twenties & needlepoint got me through some tough times. Back sewing now & just bought a computerised machine, so your channel has been inspirational. Now need to get a grip with sewing with knits & tackle my overlocker fear, it’s been sat looking at me for over a year! Thank you so much for the video, much appreciated.
Wow you've dealt with a lot. Ive had some breathing difficulties with my kidney problems (which I didn't touch on in this video) so I can understand that side too, very scary. Glad you liked the video x
I definitely am a list maker, and one thing I have also found helps me feel better sometimes is to list everything I have achieved on that day. I started doing this because one day, I was moaning to my husband that I hadn't got anything done. He looked rather surprised and said he thought I had done quite a bit. So, I made that first list and it was actually quite long! I suppose it was just that I hadn't gotten to the main thing I had in mind to do, so it felt like I hadn't done anything at all. The mind plays funny tricks, but putting things in writing, both plans and achievements, really helps me to realise that I actually get quite a lot done. Then when I have to take a day or two off to rest, I can feel okay about it.
You just described my life and sewing and embroidery has saved me emotionally. Your tips were spot on and exactly how I have to schedule appointments, sewing time, and resting! I can’t tell you how much your video means to me! Thank you for the encouragement and the grace of listening to our bodies. Thank you so much!
Hi! This is very helpful! I don’t have ME but I had colon cancer 20 years ago and I still deal with the ramifications of it. I have good and bad days too! I work full time too. So, I don’t get a lot of sewing done. Live your space! It looks perfect!
Thanks Claire. I have ME / CFS and Addison's disease. I agree with you 100%. Rest and pacing are so important. A good quality bed, audiobooks and UA-cam are essential. Love my sewing room that allows me to let go of everything when needed, without a guilty conscience for not cleaning up after myself. Being creative and feeling that you are achieving something, despite your health, is so important. Thank you again for being able to bring up such a difficult but important topic.
A really thought provoking vlog Claire! I am very lucky that I don’t have any chronic health conditions- just a touch of arthritis ( just down to getting older !). We often just see an outside image of someone, you come across as bright, bubbly and very funny, but we don’t know the struggles that person may have. It makes me appreciate your channel even more, knowing the issues you have to deal with day to day and how well you deal with them x ❤️❤️❤️
I'm still in the process of diagnosing a new medical issue that's come up. But as it is I already have 10 comorbid conditions that impact me heavily. I was doing well and working until last year when new symptoms started, ones that make me even more exhausted(my primary issues before were pain related more so than stamina so I'm not used to placing myself at all). I just got into sewing recently to try to lift my spirits. I can't tell you how much it meant to me to find your channel, first as a plus size woman to see patterns that fit me represented and discussed was amazing enough, and now to see this video and feel not as alone about my physical limitations due to disabilities. Thank you for everything you share with us. I had some of this figured out but I will be putting more of these tips into practice.
Thank you, Claire. Your openness about your illness is very much appreciated. I have fibromyalgia, another "invisible disability", which many people don't understand. Your tips and techniques are very accurate and helpful. Now I just have to remind myself to practice them and be kinder to myself when frustrated with my limitations.
Claire you are just wonderful, this is so thoughtful and constructive and helpful. I'm lucky enough to be a pretty well and healthy person (touch wood), but even so have to keep reminding myself that doing fewer things with more enjoyment and care - and revelling in the slow, empty moments between them - makes for a better life than cramming everything in. Thanks and take care x
Claire, you have found wisdom and courage through your illness. Thank you for sharing your thoughts and recommendations. I always find your videos uplifting and inspiring. Thank you.
I found your channel today and have been enjoying your videos. But this one really hit home for me. I had tears running down my face. Finding someone who sews and has a chronic condition similar to the ones I have makes me feel like I'm not alone. My husband passed away over 4 years ago so my 2 youngest adult children live with me. I think they feel like they should. But they are so physically strong. When I spend so much time lying down I feel guilty and sometimes wish they could feel how I feel for just 5 minutes so they'd understand I'm not lazy or making excuses. I really appreciate you making this video and I feel like finding your video was a Godsend.
Oh my, I am so pleased it has helped and given you so validation for what you're experiencing. We shouldn't need this but unless you go through this you cannot understand. Im so sorry things are like this for you, I hope they improve x
Thanks for, such helpful tips. I suffer from fibromyalgia and some of my symptoms are like yours, I find it so frustrating not being able to do things like i used to, but I do agree with you on the importance of pacing and resting .
Thank you for the video. I found you after searching size inclusive sewing patterns. Sewing has not only helped with my mental health but sewing clothes that fit me takes away some of the stress with sudden weight gain from immune system condition and medication. I think its a nice treat to feel good in clothes that people comment on how nice/creative they are. The last thing you want when dealing with weight gain out of your control is to spend ages in a shopping centre trying on clothes that don't fit, extra exhausting when you are tired to start with. I set an alarm for a snack and large glass of water hourly because I get so absorbed in sewing and creating (to escape reality) that I lose track of time!
Thank you, first one I've seen like this! I have fibromyalgia, chronic back issues and other issues. Take frequent breaks, I've learned to do a lot of things sitting on my bed ! Splitting projects up into more manageable parts!! The brain fog can be hard. I put pieces of projects on cookie sheets, or in Tupperware so I can carry the parts around and even do some lying down if needed. Thanks for the help. Don't push yourself!!
I am someone with chronic health issues and I was watching this and going why did I never think of that through half of the video. Thank you for sharing your tips.
Thanks for your help understanding chronic health conditions. My daughter has RA and life for her can be challenging. Gradually she has come to understand her need for rest, etc and no longer feels so guilty when she is having an off day. She was an accountant, and is now retired.
Thank you for this video! I have fibromyalgia, which makes life quite unpredictable. I have turned to creative outlets, which possibly could provide at least a side hustle in this tenuous economy, so I sometimes get distressed when my body can't keep up with my creative thoughts.
Thanks for sharing! I to have a whole list of things that work against my health. I have to tell people that I don't know if I can meet on that day, it depends on what my body does. It is so irritating not to be able to plan ahead ,but I have adjusted! Thank you !
Hi Claire. Thank you so much for this thoughtful video, and for sharing your health problems. I have found all your tips extremely helpful. Thanks again.
Ive not long been with you, and I’m really enjoying watching. I have spine damage and chronic pain, many years worth, worse as the years have gone on, you have given some fantastic advice, things that I personally really relate to, things I need to change, e.g I’ve got cushions and more on my desk chair, trying to get comfortable but also to save money but I need to be realistic, I really need to replace it. Thank you Claire 🙏your a ⭐️⭐️⭐️⭐️⭐️⭐️
There are so many things you spoke about that are similar to my situation that I honestly felt like crying. But I'm having a migraine right now and that always makes me emotional lol. (I hope you don't mind my making a personal comment but I think your hair colour suits you beautifully and your skin is so lovely and radiant.)
Thanks SO much for recommending this to me. Auto-immune diseases are bloody awful, so I sympathise 1000% with you. ME and RA sound so very similar - the interrupted sleep patterns, brain-fog, constant debilitating pain, physical activity causing days of being wiped out afterwards etc etc (I could also go on but it would be preaching to the converted). You gave some super tips here and I will definitely heed your advice. I am one of those who will push myself to the point of being bedridden for days - I have to knock it off! It's taken years and years for me to come to grips with this awful malady but I've learned to be honest with people now and I tell them upfront about my condition (and then follow that up quickly with "and I don't need any advice on what to do nor suggestions of "have you tried blah-blah diet/treatment etc"). All arrangements I make are contingent on "how am I feeling today" and they just have to accept and understand I can and will cancel or stand them up at a moment's notice if necessary. I concur on the dangers of too much social media "farming" on some support groups - if you're not careful, they will have your hair standing on end with the fear-mongering and doom & gloom stories - so I tend to steer clear of them these days as I can get quite despondent and depressed with them. I'm happy to report that my current sewing room re-design is being done with exactly what you suggested in mind - a "capsule" that has everything within chair-rolling distance so that I can move around easily & freely in one space without having to lug pattern-cutting equipment off to the dining-room, hunt in cupboards for fabric stashes - or run into my home-office to retrieve printed patterns etc. Thanks again.
I just came across your channel this evening. Was watching your video on your favorite sewing purchases when you made reference to your chronic health condition and this video. I can’t thank you enough for this. I was diagnosed with fibromyalgia years ago and have to tell you that your observations and coping strategies are spot on! Most all of them I have learned over the years, but don’t always remember or think of all of them and how much better things can be when they are used together. For those newly diagnosed, struggling, or just getting by, this video may be just what they needed and I’m sure you have touched and helped more people than you know. Wishing you healing blessings on your own health journey and Thank You again. Barb in Georgia USA
You are amaxing!! I dont have ME but i have sciatica and an impinged shoulder which, at 76 have slowed me down and i really appreciate your suggestions for being patient with yourself and your sewing.
I'm so proud of you! I just wanted to tell you that you're doing such an amazing job! I have ADHD and these tips are going to be really great at improving my own productivity.
I had a traumatic few episodes in my childhood, one of 8 kids, I had to deal alone. At 15 I got food intolerances, the worst is onion causing migraines. At 18 I got m.e. it was years before a diagnosis was found out about. When my back goes nuts, I made my first granny square rug, holding my hands up, laying flat on my back for weeks. I made small squares, bundled them up, and sewed them together when I could get up again. Since I got breast cancer I cannot sleep in a bed for long. I used to prop myself up and knit in bed. In my late 50's, I have long since learned to do what I can, when I can. When I can't, I don't, and I don't worry about it. Worry doesn't change things, except to leave me with less energy to get things done. I have sewing projects, for when i'm up and about, I am an odd shape, so I need to make my clothes. I cook bulk when I have projects planned, in australia we have a lovely lady who writes 4 ingredient recipe books, for food issues, that take 10 mins to prep, and a lot go in the oven... so you just have to get them out when done. Improved my life so much. When I rest, I plan projects, read and find patterns, when I can, I do small knitting or crochet projects to keep my gout pain away, keeping my fingers supple helps. I do jewellery making, patchwork, by machine and by hand, dolls clothes, embroidery and change what I am doing if I get a bit bored. I have to make lists, particularly for shopping, chemo didn't help my memory much, but my projects are in the "one year," rather than one day category. Doing small things anyway, keeps that useful feeling happening. I don't just look at the same four walls and ask why me? I distract myself, and do household tasks in segments. My cat wakes me for his breakfast if i'm asleep at 6 am, so I usually end up asleep in the mornings, but i'm not in control of that either. I cannot sleep, when I am not sleepy at all. I muddle along... All the best
I'm acquainted with ME, a lot of the symptoms you've described also fit me as well. Brain fog, lack of energy, recovery time after outings. Etc. When I was 11 I was diagnosed with a seizure disorder they could never effectively control the disorder with medication, I lived with it for 15 years (I had a seizure every hour 24/7) until I had brain surgery, they removed a fist sized peice of my left frontal lobe, I had a birth defect. I thought I had a new lease on life because I didnt have seizures and could actually sleep through the night, I was wrong. Living with what is now labeled a brain injury has been ... fun. As you said this is very dark, but I have many blessings now. My faith in Gods promises, a husband and parents that love me, dogs that need me (to feed them chicken) LOL! And a hobby that makes me happy.
Sorry to hear of your struggles..my best friend from childhood has epilepsy so I have some insight. She dropped dead at 34 which they attributed to epilepsy, although no seizure when she died. Within 3 months of her death I developed ME symptoms. That was 11 years ago x
Very good points some of which I do without thinking. I try to plan my errands ahead of crowds and in a circle so it goes faster. I also grab extra if I can so I can save energy later. I try to make my Sundays my recovery day to wear clothing that is compatible to any wound care I need to do including smelly remedies. I get flack from a neighbor about no people on Sundays but I try hard to stick to the self care time so I can be a better Mom later. Also my kids don't care what I'm wearing or if I smell funny so it gives us extra time for crafts, learning, games, etc. Meal planning also helps me cope so that I eat healthy consistently.
Thank you for this video. It is amazing. Some great tips for us. My big take away is the need to pace. I am terrible for not doing it and need to get better at it.
Hi Claire. Thank you for sharing your experiences. I can totally relate as I like many others have also shared, have fibromyalgia. The symptoms and pain can be so debilitating. I had a really bad night last night with restless legs and was pacing the floor in pain. I decided to use the time to develop and cut out a peg bag pattern. It took my mind away from the pain and I was eventually able to get to sleep at 6 o’clock. Hopefully I will be able to start sewing it up today. Stay safe. 😁
I found this video extremely useful, maybe the most useful UA-cam video I've watched. I've never heard of ME but I've been struggling with something that sounds very similar since 2004. In 2006, it caused me to become unable to work. Since then it has become worse. I take over twenty prescription drugs, most are to keep me awake or help me sleep. They aren't very successful. My sleep schedule rotates similar to yours. The numerous doctors I see have never mentioned ME but I'm going to ask if it could be my issue. It would be wonderful to know what is wrong with me.
Sorry to hear this. Please do your research before approaching your doctor, most are not knowledgable. Theres useful links in my description box. I see a lot of people asking to see a rhumatologist, not sure if that helps.
Thank you Ms. Claire for sharing this video. I have Rheumatoid Arthritis and I found you on one of my *fatigue days*. Thank you for saying that it's OK and not to feel guilty. My sewing puts me in that happy place. Your demeanor is so cute and I enjoy playing your videos while I sew. 💜
Absolutely great tips. I have psoriatic arthritis and get very frustrated at my limitations. You are so right that going out and about knocks me down for a day or two.
Hiya, Good advise in your video, thank you for sharing, I enjoy your videos ☺ I need a better table for cutting fabric at, it was good to hear your experience with Ikea table system. I also have been living with chronic illnesses including M.E/ CFS & fibromyalgia for over 15 - 20 or so years - it's a full time job in itself isn't it!. I like to learn new craft skills when I can too, and watching others enjoy their crafts is very uplifting. Although like you say, I have keep an eye on low / flare up days and not to get drawn into negative self thoughts comparing. I found books on mindfulness, meditation and Buddhism had some great useful advise too. It has really helped me manage my reactions to these conditions. I'm into sewing at the moment but not made much, this year I made about 20 face coverings (Twig & Tale pattern) and a new tote bag with long strap for my laundry pegs and I'm itching to make clothes - but flare ups, pacing and laundry etc you know how it goes.. I need to manage planning and rest times better and your video is a timely reminder , thank you x
Me too! You described it near perfectly. Thank you for your suggestions. I have been pushing myself a little too much thinking a day off was a bad thing. Sometimes, one just has to do nothing, too. Been battling this illness since the early 90s or before with some periods of remission. Glad for online friends. Gentle hugs. 🤗
Finally faced up to watching this, great info Claire. It was very validating for me to hear you talk about your sewing space and the need to have everything close, I am in the middle of working out mine. I have an old scarred wooden dining table that I have covered in cork and I am looking at prettily turned wood feet (leg extensions) to screw into bottom of legs to give me the extra 15 cm in height I need to use it less painfully.
I live with chronic pain from spinal damage and osteoarthritis so i can relate to everything you said. I have shared this video in my positive pain management, group thank you x
I am so glad that you found sewing and I'm so glad that I found you and your videos. I deal with most of the same symptoms that you have but I have a different disease and you did hit the nail on the head. I still have problems dealing with the guilt when I have to stop and rest but I am trying to get over that. I enjoy your videos so much and look forward to seeing the newest one that comes up. I wish you all the best always
Thank you so much for sharing your situation with your subscribers, it was a shock to me listening because so many of your issues match mine. The one that leapt out at me most was your sleeping pattern, because that's the story of my life. I try so hard to stay on the normal 24 hour schedule but I can never manage more than a couple of days and then I'll sleep 12 or 14 hrs and I'm back on the round the clock circuit just like you. I'm a cancer survivor, five years post chemo for stage 3 non Hodgkin's lymphoma, but just before my diagnosis was confirmed I had emergency surgery for a perforated duodenal ulcer. Then the scan I had prior to chemo showed I had a benign heart tumour so I had open heart surgery 9 months after chemo was completed. I'm also 75 and have COPD, and have so little energy that I get very little done beyond cooking dinner and weekly laundry these days. I try to save my bursts of energy for important things but going out does me in for several days too. It's actually a relief to know I'm not alone in often finding coping a struggle. Thanks again. 💖.
You have support from across the pond😊 This sound similar to what I deal with lupus/fibromyalgia. You can't take care of anything if your tank is empty.
Great vlog. I hope that your condition improves soon. Thank you so much for sharing Claire. I think that the advicei n here is good for many many - especially about listening to our bodies and not trying tp be superwoman.
Great video. I am familiar with the issues these days so good reminder -but at one point would have been eye opening so am sure it will seriously help someone a great deal.
How very timely. I have mold toxicity. Have you ever been tested for it? Throughout the years, it has been mis-diagnosed as CFS, MS, Lupus, Lyme disease. Almost died from it 5 yrs ago. Same as you, major glitch in my life. There are days I can easily sleep 16 hours a day. I have been diagnosed autoimmune and do weekly infusions of gamma globulin. Inflammation is terrible when it happens. Quarantine has been hard in a 66 yr old house where I live with my mother and mold inside the walls. Was put on prednisone to help with airway inflammation and then developed insulin resistance from that. I won’t go on about it. My family calls me a wacko, especially when I mention it. But I must agree pacing and good nutrition help me get by. Thank you for talking about your CFS.
Thank you very much for making this video. I also have ME as well as Fibromyalgia... 7.5 years now. Still bed and home bound... mine was caused by Lyme disease. I hope you're having a very good day today 🌷🌷
I´m quite late to this video but I really needed to hear all of this! Especially the part with "no one died, did they?" when you weren´t able to complete everything you wanted and had to postbone. THANK YOU!
What an important video! Thank you for making it. I have several hobbies including sewing and I have put them on kind of an energy scale. Some days I have enough energy for sewing, but if not, maybe I have enough for card making, but if not, maybe I have enough for genealogy, but if not, I can lay down and watch UA-cam videos, which is how I came across you! I'm happy I did!
I’ve just found your channel and love it! I have had moderate/severe ME for 13 years so I totally get the challenges you face. I have to use a wheelchair when I’m out of our home and in the summer I was trying to find a new cover for the cushion. When I couldn’t find what I wanted I decided to dust down the sewing machine I’ve had since I was a teenager (used maybe 5 times in the 38 years I’ve had it!) and make a cushion cover. I managed it, with varying degrees of success! I’ve been hooked ever since 😃. It’s still early days with my sewing and with every project I attempt I fall in love with it a little more 😍. I’m going to view your previous videos as I think I can learn a lot from you 🙏 Take care x
Came here from your more recent video. That was really helpful. Thank you 🐱 I take the time to rest when I need to. I have learnt to. But it is so frustrating to not be able to finish or start my creative projects...
Love the new hair colour, looks fabulous!! really helpful video, I'm going to make Hubs watch it as he was diagnosed with ME in the early 80's and even now has days with loads of symptoms. Your efforts will really help him"!!!
Wow, I REALLY appreciate this! I've been chronically tired since I was a teen with no explanation. Doctors put me on stimulants which take a toll but it seems to be the only way I can get anything done. I also have ADD and a number of other psychiatric disabilities but I want sewing to be my job. I tell people that I work slowly but I take care to do things "right", too. I will also take 1-3 days to just space off and nap a lot.
I, too, live with chronic illness that rules my world. It started when I got meningitis at the age of 58. At least that’s how old I think I was. I may be off one year or the other. Our limitations are the same except for the ‘on fire’ issue. Some days I just can’t...anything. I feel totally useless and like I’m a waste of space. BTW I love your videos. I feel like we’re going to be friends. Blessings
I was pleasantly surprised by your video as I have the same thing as you ! I have literally taken years to not feel guilty about not being able to put in full busy days like I used to but I would say these last five years I have learned the pacing and resting and it works so well for me and I don't have any guilt about it at all. My husband is very understanding and that help enormously also take care and looking forward to more of your video's
Wow, you guys rock my socks!!! I am so moved and humbled by reading all of your heartfelt comments about your own circumstances!!! I honestly would like to sit here and give thoughtful replies to everyone but I would be pushing myself beyond my limits but please know I have read and appreciated every single comment!!! Honestly, I am so humbled and feel sorry so many of us are struggling!! If you know anyone who may benefit from my video please share it with them, I would love for more people to get benefit. I agree these types of videos are so needed but I cant deny I was nervous about posting it. So so glad that its helped you xx
Penguin and Pear Dressmaking I’m sending it to my sister she’s healthy and try to push me to do more when I have none left.i hope she will understand by illness more thank u again and get some rest.
Oh wow please report back to let me know if it does help. Also, has she seen the film unrest? That should help too x
I can appreciate your nervousness and hesitation about posting the video, wondering how it would be received but so pleased you did. You will have given so many people with similar issues encouragement & those who are fit and well some appreciation of the what others have to deal with on a daily basis. Well done & make sure you keep well.
Thank you.. it was also about being so open but you are right it will help many as evidenced by all the lovely thoughtful comments. Thank you x
So glad that you have shared this experience with us. Started experiencing most of these same symptoms after a third post-cancer surgery, when all of a sudden I couldn't face getting out of bed most days. Things have improved quite a bit in the intervening 10 years, where some of it can be controlled via good food choices (as you mentioned), allowing myself to sleep when I need to instead of trying to stick to some artificial schedule, and generally forgiving myself for not getting things done as quickly as might normally be expected. I have also found Headspace useful to learn how to focus, in particular, when I get a bit breathless (as I noticed you did a few times when explaining how the illness affects you). Evidently, this is one of the lesser known symptoms and can be quite distressing. Your courage in working through all this and sharing it with us is so very appreciated -- thank you!
I also have ME and it was so comforting to watch this video and read the comments. I seem to have a formula for my sewing. Day one, I get the pattern ready. Either stick it together or trace it out. Day 2, I press the fabric and pin on the pattern, if I start to tire I cut it out roughly and sit down to cut it neatly. Day 3 I mark the pieces and apply interfacing. Days 4 onwards I start sewing, always aware of tiredness creeping up. I can usually do 2- 4 hours. This way I have a new dress in about a week. There 's no rush, I enjoy handsewing hems. We all need to learn to be kind to ourselves.
Great advice x
That is a great schedule. I seem to expect myself to do several parts of the process in one day, then get discouraged.
"no one died, did they" - sometimes we just need a little perspective! Most of your tips are completely useful for everyone, thank you for sharing them with all of us
I love your expression of nobody died. As a person in management I had 120 people to deal with and I used to say that to them . I would just go ahead and fix the errors and if they figured it out which they mostly did that's what I would say to them lol miss working actually but am retired
Thank you so much for this, Clare. I am nearly 72, have Fibromyalgia, severe spinal stenosis, and have had cancer with chemo and radiation leaving me with limits. I returned to sewing just over a year ago and get discouraged because of limits but also how much I have forgotten and how poor my sewing has become. You have given me a boost. I need the creative outlet and it is worth the effort to continue.
The advice to not feel guilty really resonates, thank you. I have known these things but needed to hear them put together by someone who has been there. Hugs!
I'm so sorry to hear of your experiences Sue. Im so very very pleased my video is able to give you a little boost x
Bless you
This is so useful. So many of us are trying to be superwomen. Now at 79 I hurt my back and have to rest and I run out of energy. I find myself comparing myself to others. If I go out with my hiking group it takes me a couple of days to recover. When I was healing and sitting in my chair I decided to sew which I had not done in years. Now I am making clothes I can wear. There has been a learning curve with knits and matching fabrics to patterns but I persevere. And thanks to channels like yours I am making progress. I think the pacing and resting is the things I need to put into practice more. Thanks Claire
Thank you. I find you such an inspiration. I was a nurse led a very busy active life. Now retired and the last 2 years I'll health and in constant pain have been a shock. Mentally I struggled. I have found sewing very therapeutic. I am lucky my hubby built me a sewing shed. So I can leave stuff out and do as much or as little as I like. The small ironing table was a revalation! I admire your mental attitude, although I am sure we don't see your bad days but as you say, friendship gets you through. I joined Rock choir and singing lifts my spirits. One of the sewing contestants is a rock choir member! She sings while she sews! But my Rockie mates have lifted me out of some dark days. Thanks for all the tips xx
Thank you. I definitely have many days where I'm not coping well but overall I try to think positively. Thanks for your support x
This is great! I have fibromyalgia and already follow most of your suggestions. It is good to have a similar chronic condition tell their story so more people are aware of what we go through. Thank you.
I was diagnosed with MS twelve years ago. I am learning to sew and your channel is really helpful and an inspiration xx
You are right on. I have RA, fibromyalgia, and Sojourns.it is surprising how quickly the energy drains and how slowly your energy returns. I’ve been dealing with this for 20 yore now. I hide it for several years and NOW it has caught up to me. Thank you for being brave and speaking out.
I was similar, worked myself into the ground for an (ungrateful) employer. Paying the price now! But lots to be thankful for x
I understand. I have been diagnosed with an autoimmune disease. At this time, my rheumatologist believes I have Sjogren’s Syndrome due to my symptoms of extremely dry eyes and mouth. This includes flares of extreme fatigue. I am learning to pace myself. Thanks for posting this. So many people, including former close friends, think it’s all in my head. Grrrrrr
Please please ignore those people, they're ill informed and ignorant. Sorry to hear you also have struggles. I hope the video helped you. Thinking of you x
Some of my friends thought that too, but then I told them that it was, since I have a BRAIN INJURY. I understand how frustrating it can be, I've never looked sick. People don't realize how much work it takes to not look dead. LOL! Hang in there.
I am so glad to find your vlog. I have always loved to sew but am disabled because of MS, fibromyalgia, sjogrens. I have begun to loose the use of my hands & your positive attitude is so uplifting. Giving myself permission to "do a bit then rest a bit" has been such a battle. I have also had to deal with doctors, family & others who repeated "it's all in your head til I thought I was crazy or even worse, lazy. Thank you for sharing.
Thank you! You are so honest and genuine. I started sewing to get away from the heavy thoughts. My mother and father are seriously ill and it consumed me. I was recently on knee surgery and I can say that no matter the pain, sewing helps to be in the moment, to feel successful.
Accepting my limitations has helped me.
YES!
Me too :)
Thank you for your take in this subject. 😩I have been battling FIBROMYALGIA for several years now and the chronic pain and other problems associated with it can and often wipe out weeks at a time. This is why I watch a lot of UA-cam. 🤗I have set up a lovely craftroom as I love papercraft as well as making most of my own clothes. Because I do lots of crafty makes an don't leave home often, I find that I don't need many clothes, so there is little to do on the sewing side of my crafts. 😣I also don't get to the shops much as the craft shops are all over an hour away from my home. I also will not buy anything online as it encourages the closure of retailers and it won't be long when we will be FORCED to only buy the rubbish that online stores want you to have and there will be no alternatives.😤
Sorry for my rant, but it is how I feel. Regards Christine 🙋♀️🇦🇺👍🏻
We sometimes need to rant. Bottling emotions and thoughts inside is very unhealthy. Stay strong!
@Theloveis_sewnin! I was diagnosed 7years ago after waiting 10 years to get the tests. My heart goes out to anyone that has Fibroyagia because it is a very misunderstood condition. It is such a hard condition to live with, and even loved ones find it difficult to understand what is happening in our bodies at any given moment. I have found that giving up red meat and gluten has helped me a great deal to ease the pain of day-to-day living. Regards Christine 🙋♀️🇦🇺👍🏻
Try omitting sugar as well, ive had some relief doing that.
@Theloveis_sewnin! sorry, I forgot the sugar. Thank you Claire for reminding me about that. I am a diabetic, so I automatically just don't think about telling to leave it out. Regards Christine
You are fantastic! I shave ME, Fibromyalgia, hypothyroidism and Bipolar. I love sewing but the frustration of exhaustion really gets me down but listening to you and your takeaways, have already got me thinking about how to change things hopefully to make things easier and more fulfilling. Thank you so very much x
I'm so glad to help
Claire, thank you so much for this excellent video. But for details, you accurately told my story. It feels good to know I am not fighting on my own through my daily challenges of pain and fatigue. Personally, I can't fully express my thanks to the wonderful UA-cam sewing vloggers, who I found during a long hospital stay, who lift my spirits every day. Thanks and best wishes.
Sorry to hear you have similar struggles but its so reassuring to hear your story and others like you. Im very glad my video and everyone's has helped x
Feeling you are not alone makes such a positive difference - just knowing someone else understands. Thank you again! x
Good to 'meet' someone here of my age - I'm 76 - wishing you all success in adapting to your specific needs.
you are so amazing Clare,I did find your video useful,i know people who push them selves beyond their limits and feel guilty if they cant complete the task,you speak so much common sense,thank you for your thought provoking video,i love your sew alongs and great tips ,take care of yourself Claire,you are my number one person to follow,
Wow thank you so much x
Thank you for your honesty. I have fibromyalgia and have to do exactly what you have been describing. It’s so frustrating but the more people talk about it you know you are not alone.🥰
I'm sorry to hear of your struggles, thank you for your comment it means a lot x
Claire, I'm late watching this episode, but I wish I were right there beside you to give you a big hug! Thank you for taking the time and effort to cover this topic. I've been sewing since I was a young girl learning from my Mom who was a fantastic seamstress. I am now 64 years old and was diagnosed at the age of 49 with Multiple Sclerosis. Many of your symptoms of fatigue, brain fog, and cognitive disabilities are similar to those of us who have M.S. I had to give up sewing for several years because my small motor skills (hands) would not allow me to continue. Through much physical therapy I was able to regain the use of my hands and began sewing again. You are correct - the most important lesson, albeit the hardest one, is to LISTEN TO YOUR OWN BODY and take breaks. Learn to pace yourself! I'm now in a wheelchair and I've made peace with my body (certainly not the disease) and am able to live a more productive happier life just as you have. Sewing is my therapy. You, my friend, are an angel. 💗
Thank you. Your story is inspirational. I struggle with my hands some times too as I have a pronounced tremor. Id do anything to fix that.
Here I am lying on my bed watching this on my iPad because I’m too tired to get up and do anything. This is so encouraging I am glad you are making this video.
Thank you!
I knew we had a lot in common! I also had a near fatal car accident and have a brain injury and disabilities from a spiral femur fracture. It's so good to see someone like me doing so well. Thanks for this. I feel like you were speaking to me!
Hi Rhonda, sorry to hear what you are dealing with. I cant imagine being in a near fatal car accident with those injuries, esp on top of invisible illness. Youre so strong x
@@Penguinandpear I have ME/CFS too. Forgot that part!!
@@marlysmithsonian5746 im sorry, stay strong x
you are amazing-this has been really useful.The guilt for resting is a hard one. people in your life dont seem to understand the importance of so much rest and make you feel like you are just being lazy. Thank you for this.
Yes! I could write a book on that! If only I had the energy!
Even as someone who doesn’t have chronic illness these steps are so helpful because every body is different ❤️ I’ve never been diagnosed with anything serious but I know that I came spend the entire day sewing because it does take a lot of work my neck and back and eyes definitely feel it the next day! I’ve learned to try and break it up or do it different ways. I enjoy having something to do with my hands so if it’s something small like mending a tear or something I’ll hand sew it while I work or while I watch a show or something. I’ve really come to enjoy doing small things like that and it’s also making me want to pick up knitting again for when I’m through my mending pile. Thank you so much for putting yourself out there and sharing your journey, I love that more and more people are doing this and I feel like it just makes the amazing sewing community that we have every better ❤️🌻
I was diagnosed with chronic fatigue in 2011. The pain that comes 's the most difficult b for me, burning and ache in hands and feet mostly. I have developed an aversion to food, the planning, shopping cooking, cleanup makes me tired just thinking about it. Consequently in last year have lost 30 pounds and look 20 yrs older. Therapist helping but a slow process. Sewing does bring me pleasure, thank you for this video and tips. The most helpful. Was to connect with social media to sewing communities. Keep putting one foot in front of others, and do what you can do each day. Don't forget your prayers for self and others.
Totally understand. I have fibromyalgia that crosses over a lot with ME. Thanks for talking about chronic conditions
This is an amazing video. I have U/C and was diagnosed after my 3rd child 34 years ago. They are all grown now and so am not making clothes as much. 3 years ago I had to finally retire as I just did not have the stamina to put in a full day. I have been a sewer all my life, cannot remember a time I did not sew but have recently finished a bookbinding certificate and until covid was starting to teach. I find the hardest thing for me is to sit and do nothing even though my body requires it, my husband says to rest, but my mind swirls around the quilts and books I am working on or the dust bunnies I know are hiding under the bed. I try to not feel guilty but as you say if it waits a day or a week or a month no one will die. Thank you for reinforcing what I know and reminding me that I do know it.
THIS WAS SO HELPFUL!!!
Clare, great video and such practical and good tips that will apply to so many people living with chronic medical conditions. In respect of my issues, I can relate so much to what you mention. I have had RA since I was 19 (turning 70 next mth) & lupus. In the last ten yrs COPD resulting in getting out of breathe even on the flat. I try to pace myself, but admit there are times I run on fast speed, then go down like a burst balloon. Used to sew a lot when in my twenties & needlepoint got me through some tough times. Back sewing now & just bought a computerised machine, so your channel has been inspirational. Now need to get a grip with sewing with knits & tackle my overlocker fear, it’s been sat looking at me for over a year! Thank you so much for the video, much appreciated.
Wow you've dealt with a lot. Ive had some breathing difficulties with my kidney problems (which I didn't touch on in this video) so I can understand that side too, very scary. Glad you liked the video x
I definitely am a list maker, and one thing I have also found helps me feel better sometimes is to list everything I have achieved on that day. I started doing this because one day, I was moaning to my husband that I hadn't got anything done. He looked rather surprised and said he thought I had done quite a bit. So, I made that first list and it was actually quite long! I suppose it was just that I hadn't gotten to the main thing I had in mind to do, so it felt like I hadn't done anything at all. The mind plays funny tricks, but putting things in writing, both plans and achievements, really helps me to realise that I actually get quite a lot done. Then when I have to take a day or two off to rest, I can feel okay about it.
You just described my life and sewing and embroidery has saved me emotionally. Your tips were spot on and exactly how I have to schedule appointments, sewing time, and resting! I can’t tell you how much your video means to me! Thank you for the encouragement and the grace of listening to our bodies. Thank you so much!
Hi! This is very helpful! I don’t have ME but I had colon cancer 20 years ago and I still deal with the ramifications of it. I have good and bad days too! I work full time too. So, I don’t get a lot of sewing done. Live your space! It looks perfect!
Thank you. Its far from perfect but it does work well for what I do. Im so sorry about your health. X
Thanks Claire. I have ME / CFS and Addison's disease. I agree with you 100%. Rest and pacing are so important. A good quality bed, audiobooks and UA-cam are essential. Love my sewing room that allows me to let go of everything when needed, without a guilty conscience for not cleaning up after myself. Being creative and feeling that you are achieving something, despite your health, is so important. Thank you again for being able to bring up such a difficult but important topic.
A really thought provoking vlog Claire! I am very lucky that I don’t have any chronic health conditions- just a touch of arthritis ( just down to getting older !). We often just see an outside image of someone, you come across as bright, bubbly and very funny, but we don’t know the struggles that person may have. It makes me appreciate your channel even more, knowing the issues you have to deal with day to day and how well you deal with them x ❤️❤️❤️
Thank you so much Lynne x
I'm still in the process of diagnosing a new medical issue that's come up. But as it is I already have 10 comorbid conditions that impact me heavily. I was doing well and working until last year when new symptoms started, ones that make me even more exhausted(my primary issues before were pain related more so than stamina so I'm not used to placing myself at all). I just got into sewing recently to try to lift my spirits.
I can't tell you how much it meant to me to find your channel, first as a plus size woman to see patterns that fit me represented and discussed was amazing enough, and now to see this video and feel not as alone about my physical limitations due to disabilities. Thank you for everything you share with us. I had some of this figured out but I will be putting more of these tips into practice.
I'm so happy my channel has helped you 💓
Thank you, Claire. Your openness about your illness is very much appreciated. I have fibromyalgia, another "invisible disability", which many people don't understand. Your tips and techniques are very accurate and helpful. Now I just have to remind myself to practice them and be kinder to myself when frustrated with my limitations.
Claire you are just wonderful, this is so thoughtful and constructive and helpful. I'm lucky enough to be a pretty well and healthy person (touch wood), but even so have to keep reminding myself that doing fewer things with more enjoyment and care - and revelling in the slow, empty moments between them - makes for a better life than cramming everything in. Thanks and take care x
YES! YES! and YES! less is more after all, in many life aspects ;)
Claire, you have found wisdom and courage through your illness. Thank you for sharing your thoughts and recommendations. I always find your videos uplifting and inspiring. Thank you.
Thank you Ginny x
I found your channel today and have been enjoying your videos. But this one really hit home for me. I had tears running down my face. Finding someone who sews and has a chronic condition similar to the ones I have makes me feel like I'm not alone. My husband passed away over 4 years ago so my 2 youngest adult children live with me. I think they feel like they should. But they are so physically strong. When I spend so much time lying down I feel guilty and sometimes wish they could feel how I feel for just 5 minutes so they'd understand I'm not lazy or making excuses. I really appreciate you making this video and I feel like finding your video was a Godsend.
Oh my, I am so pleased it has helped and given you so validation for what you're experiencing. We shouldn't need this but unless you go through this you cannot understand. Im so sorry things are like this for you, I hope they improve x
Thanks for, such helpful tips. I suffer from fibromyalgia and some of my symptoms are like yours, I find it so frustrating not being able to do things like i used to, but I do agree with you on the importance of pacing and resting .
Thank you for the video. I found you after searching size inclusive sewing patterns. Sewing has not only helped with my mental health but sewing clothes that fit me takes away some of the stress with sudden weight gain from immune system condition and medication. I think its a nice treat to feel good in clothes that people comment on how nice/creative they are. The last thing you want when dealing with weight gain out of your control is to spend ages in a shopping centre trying on clothes that don't fit, extra exhausting when you are tired to start with. I set an alarm for a snack and large glass of water hourly because I get so absorbed in sewing and creating (to escape reality) that I lose track of time!
Welcome! Setting an alarm ⏰ is a great idea!
Thank you, first one I've seen like this! I have fibromyalgia, chronic back issues and other issues. Take frequent breaks, I've learned to do a lot of things sitting on my bed ! Splitting projects up into more manageable parts!! The brain fog can be hard. I put pieces of projects on cookie sheets, or in Tupperware so I can carry the parts around and even do some lying down if needed. Thanks for the help. Don't push yourself!!
I have fibromyalgia and you and I have a lot of issues in common. Thanks for your tips. Keep fighting.
I am someone with chronic health issues and I was watching this and going why did I never think of that through half of the video. Thank you for sharing your tips.
Thanks for your help understanding chronic health conditions. My daughter has RA and life for her can be challenging. Gradually she has come to understand her need for rest, etc and no longer feels so guilty when she is having an off day. She was an accountant, and is now retired.
Thank you for this video! I have fibromyalgia, which makes life quite unpredictable. I have turned to creative outlets, which possibly could provide at least a side hustle in this tenuous economy, so I sometimes get distressed when my body can't keep up with my creative thoughts.
Me too x
Thanks for sharing! I to have a whole list of things that work against my health. I have to tell people that I don't know if I can meet on that day, it depends on what my body does. It is so irritating not to be able to plan ahead ,but I have adjusted! Thank you !
Hi Claire. Thank you so much for this thoughtful video, and for sharing your health problems. I have found all your tips extremely helpful. Thanks again.
Ive not long been with you, and I’m really enjoying watching. I have spine damage and chronic pain, many years worth, worse as the years have gone on, you have given some fantastic advice, things that I personally really relate to, things I need to change, e.g I’ve got cushions and more on my desk chair, trying to get comfortable but also to save money but I need to be realistic, I really need to replace it.
Thank you Claire 🙏your a ⭐️⭐️⭐️⭐️⭐️⭐️
There are so many things you spoke about that are similar to my situation that I honestly felt like crying. But I'm having a migraine right now and that always makes me emotional lol. (I hope you don't mind my making a personal comment but I think your hair colour suits you beautifully and your skin is so lovely and radiant.)
Thank you x
Very helpful suggestions thank you.x
Thanks SO much for recommending this to me. Auto-immune diseases are bloody awful, so I sympathise 1000% with you. ME and RA sound so very similar - the interrupted sleep patterns, brain-fog, constant debilitating pain, physical activity causing days of being wiped out afterwards etc etc (I could also go on but it would be preaching to the converted). You gave some super tips here and I will definitely heed your advice. I am one of those who will push myself to the point of being bedridden for days - I have to knock it off! It's taken years and years for me to come to grips with this awful malady but I've learned to be honest with people now and I tell them upfront about my condition (and then follow that up quickly with "and I don't need any advice on what to do nor suggestions of "have you tried blah-blah diet/treatment etc"). All arrangements I make are contingent on "how am I feeling today" and they just have to accept and understand I can and will cancel or stand them up at a moment's notice if necessary. I concur on the dangers of too much social media "farming" on some support groups - if you're not careful, they will have your hair standing on end with the fear-mongering and doom & gloom stories - so I tend to steer clear of them these days as I can get quite despondent and depressed with them. I'm happy to report that my current sewing room re-design is being done with exactly what you suggested in mind - a "capsule" that has everything within chair-rolling distance so that I can move around easily & freely in one space without having to lug pattern-cutting equipment off to the dining-room, hunt in cupboards for fabric stashes - or run into my home-office to retrieve printed patterns etc.
Thanks again.
I just came across your channel this evening. Was watching your video on your favorite sewing purchases when you made reference to your chronic health condition and this video. I can’t thank you enough for this. I was diagnosed with fibromyalgia years ago and have to tell you that your observations and coping strategies are spot on! Most all of them I have learned over the years, but don’t always remember or think of all of them and how much better things can be when they are used together. For those newly diagnosed, struggling, or just getting by, this video may be just what they needed and I’m sure you have touched and helped more people than you know. Wishing you healing blessings on your own health journey and Thank You again. Barb in Georgia USA
You are amaxing!! I dont have ME but i have sciatica and an impinged shoulder which, at 76 have slowed me down and i really appreciate your suggestions for being patient with yourself and your sewing.
Ive had sciatica before, its very painful. You have my sympathy x
I'm so proud of you! I just wanted to tell you that you're doing such an amazing job!
I have ADHD and these tips are going to be really great at improving my own productivity.
I had a traumatic few episodes in my childhood, one of 8 kids, I had to deal alone. At 15 I got food intolerances, the worst is onion causing migraines. At 18 I got m.e. it was years before a diagnosis was found out about. When my back goes nuts, I made my first granny square rug, holding my hands up, laying flat on my back for weeks. I made small squares, bundled them up, and sewed them together when I could get up again. Since I got breast cancer I cannot sleep in a bed for long. I used to prop myself up and knit in bed. In my late 50's, I have long since learned to do what I can, when I can. When I can't, I don't, and I don't worry about it. Worry doesn't change things, except to leave me with less energy to get things done. I have sewing projects, for when i'm up and about, I am an odd shape, so I need to make my clothes. I cook bulk when I have projects planned, in australia we have a lovely lady who writes 4 ingredient recipe books, for food issues, that take 10 mins to prep, and a lot go in the oven... so you just have to get them out when done. Improved my life so much. When I rest, I plan projects, read and find patterns, when I can, I do small knitting or crochet projects to keep my gout pain away, keeping my fingers supple helps. I do jewellery making, patchwork, by machine and by hand, dolls clothes, embroidery and change what I am doing if I get a bit bored. I have to make lists, particularly for shopping, chemo didn't help my memory much, but my projects are in the "one year," rather than one day category. Doing small things anyway, keeps that useful feeling happening. I don't just look at the same four walls and ask why me? I distract myself, and do household tasks in segments. My cat wakes me for his breakfast if i'm asleep at 6 am, so I usually end up asleep in the mornings, but i'm not in control of that either. I cannot sleep, when I am not sleepy at all. I muddle along... All the best
Wow, im very impressed with your mindset
I'm acquainted with ME, a lot of the symptoms you've described also fit me as well. Brain fog, lack of energy, recovery time after outings. Etc. When I was 11 I was diagnosed with a seizure disorder they could never effectively control the disorder with medication, I lived with it for 15 years (I had a seizure every hour 24/7) until I had brain surgery, they removed a fist sized peice of my left frontal lobe, I had a birth defect. I thought I had a new lease on life because I didnt have seizures and could actually sleep through the night, I was wrong. Living with what is now labeled a brain injury has been ... fun. As you said this is very dark, but I have many blessings now. My faith in Gods promises, a husband and parents that love me, dogs that need me (to feed them chicken) LOL! And a hobby that makes me happy.
Sorry to hear of your struggles..my best friend from childhood has epilepsy so I have some insight. She dropped dead at 34 which they attributed to epilepsy, although no seizure when she died. Within 3 months of her death I developed ME symptoms. That was 11 years ago x
❤❤❤❤❤thank you Claire, so needed video.
I too have back issues and have learned that when I need to rest I do
Very good points some of which I do without thinking.
I try to plan my errands ahead of crowds and in a circle so it goes faster. I also grab extra if I can so I can save energy later.
I try to make my Sundays my recovery day to wear clothing that is compatible to any wound care I need to do including smelly remedies. I get flack from a neighbor about no people on Sundays but I try hard to stick to the self care time so I can be a better Mom later. Also my kids don't care what I'm wearing or if I smell funny so it gives us extra time for crafts, learning, games, etc.
Meal planning also helps me cope so that I eat healthy consistently.
Thank you for this video. It is amazing. Some great tips for us. My big take away is the need to pace. I am terrible for not doing it and need to get better at it.
Great vlog Claire. As another sewer with a disability I really appreciate the time you've taken to do this. Hugs Xx
Thank you Kathie x
Hi Claire. Thank you for sharing your experiences. I can totally relate as I like many others have also shared, have fibromyalgia. The symptoms and pain can be so debilitating. I had a really bad night last night with restless legs and was pacing the floor in pain. I decided to use the time to develop and cut out a peg bag pattern. It took my mind away from the pain and I was eventually able to get to sleep at 6 o’clock. Hopefully I will be able to start sewing it up today. Stay safe. 😁
This sounds familiar. Hope you get to sew today x
I have found sewing more effective as a painkiller than most of my prescription medication - just thinking of sewing works as a distraction for me.
Penguin and Pear Dressmaking thanks, yes I managed to make a start but it took me 3 days to finish. Worth it though. 👍
I found this video extremely useful, maybe the most useful UA-cam video I've watched. I've never heard of ME but I've been struggling with something that sounds very similar since 2004. In 2006, it caused me to become unable to work. Since then it has become worse. I take over twenty prescription drugs, most are to keep me awake or help me sleep. They aren't very successful. My sleep schedule rotates similar to yours. The numerous doctors I see have never mentioned ME but I'm going to ask if it could be my issue. It would be wonderful to know what is wrong with me.
Sorry to hear this. Please do your research before approaching your doctor, most are not knowledgable. Theres useful links in my description box. I see a lot of people asking to see a rhumatologist, not sure if that helps.
Thank you Ms. Claire for sharing this video. I have Rheumatoid Arthritis and I found you on one of my *fatigue days*. Thank you for saying that it's OK and not to feel guilty. My sewing puts me in that happy place. Your demeanor is so cute and I enjoy playing your videos while I sew. 💜
Thank you. I’m glad they help!
I am glad you are finding some things that work for you Claire. Much love.
Thanks Nancy x 😘
Thank you so much for this video! Very informative 👏 👍 it is a good birthday present 🎁 🎂 🥳😀
Thank you for helping so many people, sweet lady💕 ♥
Thank you, happy birthday!
@@Penguinandpear Thank you so much! 🎂 🎁 ❤
Absolutely great tips. I have psoriatic arthritis and get very frustrated at my limitations. You are so right that going out and about knocks me down for a day or two.
Thank you. I suffer and hate myself at times when I can't finish a project sooner then it ends up getting done
Me too but we have to be kinder to ourselves x
Thank you being so honest and transparent. You have helped so many with this video! Bless you!
Hiya, Good advise in your video, thank you for sharing, I enjoy your videos ☺
I need a better table for cutting fabric at, it was good to hear your experience with Ikea table system.
I also have been living with chronic illnesses including M.E/ CFS & fibromyalgia for over 15 - 20 or so years - it's a full time job in itself isn't it!.
I like to learn new craft skills when I can too, and watching others enjoy their crafts is very uplifting. Although like you say, I have keep an eye on low / flare up days and not to get drawn into negative self thoughts comparing. I found books on mindfulness, meditation and Buddhism had some great useful advise too. It has really helped me manage my reactions to these conditions.
I'm into sewing at the moment but not made much, this year I made about 20 face coverings (Twig & Tale pattern) and a new tote bag with long strap for my laundry pegs and I'm itching to make clothes - but flare ups, pacing and laundry etc you know how it goes.. I need to manage planning and rest times better and your video is a timely reminder , thank you x
Me too! You described it near perfectly. Thank you for your suggestions. I have been pushing myself a little too much thinking a day off was a bad thing. Sometimes, one just has to do nothing, too. Been battling this illness since the early 90s or before with some periods of remission. Glad for online friends. Gentle hugs. 🤗
you are a fantastic person for sharing with us. Your videos are wonderful and you have so much knowledge that I love to hear. Stay safe and blessed
Finally faced up to watching this, great info Claire. It was very validating for me to hear you talk about your sewing space and the need to have everything close, I am in the middle of working out mine. I have an old scarred wooden dining table that I have covered in cork and I am looking at prettily turned wood feet (leg extensions) to screw into bottom of legs to give me the extra 15 cm in height I need to use it less painfully.
I hope you get your space worked out.
I live with chronic pain from spinal damage and osteoarthritis so i can relate to everything you said. I have shared this video in my positive pain management, group thank you x
Thank you so much! Sorry to hear of your conditions
Much love and respect Claire. X
So inspiring.., you have taught me a lot and now at last feel free to listen to my body . Thank you x
I am so glad that you found sewing and I'm so glad that I found you and your videos. I deal with most of the same symptoms that you have but I have a different disease and you did hit the nail on the head. I still have problems dealing with the guilt when I have to stop and rest but I am trying to get over that. I enjoy your videos so much and look forward to seeing the newest one that comes up. I wish you all the best always
Thank you so much for sharing your situation with your subscribers, it was a shock to me listening because so many of your issues match mine. The one that leapt out at me most was your sleeping pattern, because that's the story of my life. I try so hard to stay on the normal 24 hour schedule but I can never manage more than a couple of days and then I'll sleep 12 or 14 hrs and I'm back on the round the clock circuit just like you. I'm a cancer survivor, five years post chemo for stage 3 non Hodgkin's lymphoma, but just before my diagnosis was confirmed I had emergency surgery for a perforated duodenal ulcer. Then the scan I had prior to chemo showed I had a benign heart tumour so I had open heart surgery 9 months after chemo was completed. I'm also 75 and have COPD, and have so little energy that I get very little done beyond cooking dinner and weekly laundry these days. I try to save my bursts of energy for important things but going out does me in for several days too. It's actually a relief to know I'm not alone in often finding coping a struggle. Thanks again. 💖.
So sorry to hear your struggle. So glad my video can help. Chronic illness is a big struggle.
@@Penguinandpear Thank you, best wishes to you.👍😘
You have support from across the pond😊 This sound similar to what I deal with lupus/fibromyalgia. You can't take care of anything if your tank is empty.
Thank you for sharing these tips. I have been doing it intuitively but appreciate to hear that I am not alone on this. Thanks again and God bless you!
This made my month!!! I started following you yesterday and am overjoyed to find this video.......Hope to talk more about this later............
Ahhh so pleased x
Great vlog. I hope that your condition improves soon. Thank you so much for sharing Claire. I think that the advicei n here is good for many many - especially about listening to our bodies and not trying tp be superwoman.
Thank you Eileen. Unfortunately unless they find a cure im unlikely to improve. 12 years in now. Im just glad my experience can help others x
Great video. I am familiar with the issues these days so good reminder -but at one point would have been eye opening so am sure it will seriously help someone a great deal.
How very timely. I have mold toxicity. Have you ever been tested for it? Throughout the years, it has been mis-diagnosed as CFS, MS, Lupus, Lyme disease. Almost died from it 5 yrs ago.
Same as you, major glitch in my life. There are days I can easily sleep 16 hours a day.
I have been diagnosed autoimmune and do weekly infusions of gamma globulin. Inflammation is terrible when it happens. Quarantine has been hard in a 66 yr old house where I live with my mother and mold inside the walls. Was put on prednisone to help with airway inflammation and then developed insulin resistance from that.
I won’t go on about it. My family calls me a wacko, especially when I mention it. But I must agree pacing and good nutrition help me get by.
Thank you for talking about your CFS.
Thank you very much for making this video. I also have ME as well as Fibromyalgia... 7.5 years now. Still bed and home bound... mine was caused by Lyme disease. I hope you're having a very good day today 🌷🌷
I'm sorry to hear that. Years ago a friend contracted lymes and it completely knocked him for 6. Its a horrid condition. X
I´m quite late to this video but I really needed to hear all of this! Especially the part with "no one died, did they?" when you weren´t able to complete everything you wanted and had to postbone. THANK YOU!
So glad it helped!
What an important video! Thank you for making it. I have several hobbies including sewing and I have put them on kind of an energy scale. Some days I have enough energy for sewing, but if not, maybe I have enough for card making, but if not, maybe I have enough for genealogy, but if not, I can lay down and watch UA-cam videos, which is how I came across you! I'm happy I did!
Hello! I’m like you too I also watch a lot of UA-cam.
The layout of your workpace is great... so inspirational. Sorry to hear of your health issues. Thanks a lot.
I’ve just found your channel and love it! I have had moderate/severe ME for 13 years so I totally get the challenges you face. I have to use a wheelchair when I’m out of our home and in the summer I was trying to find a new cover for the cushion. When I couldn’t find what I wanted I decided to dust down the sewing machine I’ve had since I was a teenager (used maybe 5 times in the 38 years I’ve had it!) and make a cushion cover. I managed it, with varying degrees of success! I’ve been hooked ever since 😃. It’s still early days with my sewing and with every project I attempt I fall in love with it a little more 😍. I’m going to view your previous videos as I think I can learn a lot from you 🙏 Take care x
Hi and welcome! Sorry to hear you are a fellow sufferer but so pleased to hear you found sewing. It gives me a reason to get up in the morning!
Came here from your more recent video. That was really helpful. Thank you 🐱
I take the time to rest when I need to. I have learnt to. But it is so frustrating to not be able to finish or start my creative projects...
Thank you for your thoughtfulness and honesty. This was a very thought provoking video in a good way !!!
loved this video especially, although i love them all x
Well don - well said. God bless and good luck.
I have a lot of the same as yourself, and I thank you for this insightful video.
Love the new hair colour, looks fabulous!! really helpful video, I'm going to make Hubs watch it as he was diagnosed with ME in the early 80's and even now has days with loads of symptoms. Your efforts will really help him"!!!
Brilliant video, thankyou for sharing. X
Thank you Christina x
Wow, I REALLY appreciate this! I've been chronically tired since I was a teen with no explanation. Doctors put me on stimulants which take a toll but it seems to be the only way I can get anything done. I also have ADD and a number of other psychiatric disabilities but I want sewing to be my job. I tell people that I work slowly but I take care to do things "right", too. I will also take 1-3 days to just space off and nap a lot.
I wish you every success with your career, I hope it works for you. Good on you for managing client expectations.
I, too, live with chronic illness that rules my world. It started when I got meningitis at the age of 58. At least that’s how old I think I was. I may be off one year or the other. Our limitations are the same except for the ‘on fire’ issue. Some days I just can’t...anything. I feel totally useless and like I’m a waste of space. BTW I love your videos. I feel like we’re going to be friends. Blessings
Thank you. I relate so hard to your comment but we gotta keep going.
I was pleasantly surprised by your video as I have the same thing as you ! I have literally taken years to not feel guilty about not being able to put in full busy days like I used to but I would say these last five years I have learned the pacing and resting and it works so well for me and I don't have any guilt about it at all. My husband is very understanding and that help enormously also take care and looking forward to more of your video's
Sorry to hear you also suffer :-(
Thank you so much for sharing!❤
Love your videos keep up trhe great work :)
Awesome vlog Claire!
Thank you!