Chronic illness?

This probably wasn't what you're thinking of, and if I'm overstepping, feel free to tell me to back off, but I have a lovely cocktail of comorbid mental health disorders (ADD, Depression, Anxiety, and C-PTSD), and I'm really looking forward to being able to get my first doll as a way back into some of my old hobbies. I really miss wanting to write or sew or knit, but I want to, for a doll I don't even have yet. it's the first time in years those things haven't felt like work. And I'm hoping that, for sewing and knitting, because the projects are smaller, They'll be able to hold my interest long enough to finish something.

 

Psoriasis and idiopathic primary epilepsy here.

 

I have Ehlers Danlos Syndrome Hypermobility Type, Fibromylagia, MCAD, and possible POTS. Some mental health stuff too. I've found there are lots of lovely doll people like us with chronic illnesses. Dolls definitely help me cope in a positive way.

 

I have been heavily medicated for a couple of years now for, wait for it, reflux. Not the type that you get after eating a really spicy meal, but all day, debilitating reflux. I can't easily bend over or even walk more then a few houses, and have major trouble sleeping (I already suffer from insomnia). It causes constant nausea and stomach/throat problems. Also, my hands shake so badly at times that I can't write or pick up smaller objects. And then some (severe) mental health issues (I think a lot of people here know how that feels).
I actually find the doll hobby quite soothing. It can be annoying if I can't do anything with them for a time because of my hands, but it is rather mentally relaxing.
As a side not, there seems to be a lot of chronic joint problems here. Doubt it means anything, but I thought it was interesting.
I'm really glad that your dolls are bringing back a little spark, I know too well haw hard it can be to do even basic hygiene and simple day stuff when you're feeling really down.

 

Chronic illnesses suck. My mother has Lupus, my best friend has orofacial granulomatosis, another with fibromyalgic AND ciliac disease. I suffer from a mess of conditions myself that impede my everyday life, but I will never say I understand anyone's struggle. But I can say this: I do know how it feel to not be able to get out of bed due to pain. It wasn't Chronic, but I threw out my back recently and hollllyyy crap. I said to my friend, I was like "I don't know how you deal with pain like this so constantly." Of course the pain was a little different but jeeze... the helplessness I felt when I was in bed, unable to move was the worst thing ever. And even heavy pain killers didn't do much...

 

I don't have anything "serious", like Lupus or anything, but I have severe asthma and a whole host of stomach problems and severe anxiety with a little dash of depression thrown in for flavor. I can't say my dolls have changed my life, but they've definitely provided an outlet for me to panic on, which doesn't sound great, but it is. Otherwise I fuss over my dog or health and I've been able to just grab one of my dolls and just kind of tune out some of the static for a bit.

 

I'm so glad that you found a beautiful way to enrich your life! I am a cancer survivor who will have to be followed closely for the rest of my life since chemo doesn't work on my type of cancer. It affected my heart and lungs plus I developed sarcoidosis. Everything is under control with good medications and excellent doctors but whatever you do, don't give up hope and don't let your illness define you. I've been there and did just that and my attitude made things worse. Now, like you, I find it peaceful and rewarding to create little things that turn out beautiful and have so much meaning.

Hugs to everyone here who has struggled with illness! My heart goes out to all of you.

PS. I like your avatar! I have a little dog who looks like yours.

 

I also have fibromyalgia. Symptoms since childhood (doctors dismissed as "growing pains"), diagnosed at 14, and in my mid-30s now, so it's been a constant part of my life. I also struggle with depression. Sometimes I go a few weeks or even months without actively playing with my dolls, because I just don't have the energy, but just having them around is still cheering, and the great thing about the dolls is that their feelings won't be hurt if you don't come back to them for a while. They're wonderfully patient like that

 

I have Ehlers-Danlos Syndrome. My first doll was ordered partially as a way to have a hobby that didn't require me to be overly physical, but where I could still have a sense of accomplishment with making things for him, etc. I was suffering complications of EDS at the time that had me really depressed, but the real cause wouldn't be discovered until years later. EDS is genetic, so I've had it all my life and struggled with its symptoms constantly, but my doctors missed it. Being involved with this hobby definitely helped me cope; it was good to have something to do that I could do while I was unable to participate in most physical activity.

 

It's probably not exactly what you meant but I have comorbid ASD, ADHD, depression and anxiety. My dolls provide me with something I can focus on to help with my anxiety. I need to have a task-oriented activity such as sewing or knitting to calm me down when my anxiety is especially bad or to help me focus when I get really hyper. My dolls have proved to be excellent for this in the past and hopefully they will again.

 

@unoa_im_afreak *waves* I'm an "aspie" autistic too, with a bunch of fun extras like prosopagnosia included in that. While it isn't an illness, it's hard to live in a Neurotypical world when you're not neurotypical. As I am fond of saying, "I don't suffer from Autism, I suffer from Ableism. Autism is fine."

I also have PCOS! Non-insulin resistant type, NAFLD. Hormones, ain't they fun! With the Non-Alcoholic Fatty Liver Disease the PCOS causes, I've been dealing with health issues this year, and they've just put me on Metformin which is really weird to adjust to, to make my liver behave itself.

My constant companion is severe Clinical Depression of the chemical kind, although I've got it on a leash these days. It's an old enemy and we spar regularly. Dolls really help sometimes, I feel.

The last few years I've worked out that I am also Non-Celiac Gluten Intolerant. I know there's a debate about whether that's even a "real thing", but eating gluten makes me immediately very sick, and being off it leaves me suddenly relatively healthy, but I tested negative for Celiac and they did a lot of testing, so I'll keep avoiding the stuff. It's a bizarre dance to find food I can eat .

So if any other Spoonies or folks with chronic illnesses want a listening ear, they can message me.

As for dolls, I really feel like the rest of you- they're nicely non-judgemental little "friends" who can keep you company when you're sick in bed, and on good days I can sew for them or spend some timemaking nice happy things instead of sitting alone being sad. It's such a productive hobby even if all you do is take phone pictures of your one cute dolly. It keeps me occupied with something that isn't stressful, that is pretty, and that I can do just for me, or share with friends.

 

Oh yes another PCOS sufferer here. Also with endocrine issues. It flared up really bad about six years ago, and I have not been able to hold down a job in that time. Slowly getting better, I have good days and bad days, but my energy is improving so I can get out more. Having my dolls has helped me have something to focus on, look forward to, and plan for. I'm glad I have them! Even on my worst days, I can at least plan on working on a doll. They have been a great hobby, not one I'm giving up anytime soon.

 

Hi! I suffer from Lupus, Fibromyalgia and PCOS so I understand you completely. Crafting for dolls does bring me joy but it also brings on depression when I hurt too much or just lack the energy to do it. On those off days I just plan on the next craft or work from bed and that helps to give me something to look forward to and that much needed push to fight through the depression, anxiety, or pain.

 

I have IGG defiency, which is a condition where your body doesn' t create antibodies like everyone elses. Most if not all of the vaccines I got didn't take and were probably useless and when I get sick, it takes a really long time for me to get better. The lovely added bonus of this condition is chronic fatique syndrome, which interferes with everything I want to do in life.

 

I've got a chronic bad back (never diagnosed as anything specific because nothing's shown up in x-rays, but the symptoms are otherwise identical to the condition my dad had), and general fatigue, plus I've recently been medicated for my dysmenorrhea. None of these are my 'official' disability, which isn't a physical thing. But chronic pain and fatigue issues definitely run in my family-- except for my mother, who is just about the healthiest person I think I've ever met.

It definitely throws off my hobby game-- there are so many days I've planned on getting something done, only to be unable to do anything, which leads to my trying to do everything at once when I have even a little energy, which leads to my lying around unable to do much of anything the next day because I expended more than a day's worth of energy trying to do all the faceups at once or what have you...

 

I'll chime in simply because I also have PCOS. I actually had to have one ovary removed at the end of November because it had a yuge cyst and the fallopian tube was strangling it to death. That was fun. I've been treated for depression since late HS. Oh, and I'm a diabetic. Whee?

 

I have fibro along with a host of little things that make it worse, like anxiety disorder, (well controlled) chronic major depression, arthritis, gluten allergy, new persistent daily headache. Lol, that last one is a new diagnosis as opposed to chronic tension headaches. Basically, I've had a headache for 14 years without cease, and it's a bit of a combination of tension headache and migraine at times. Lots of different timings on my illnesses, 14 to 28 years or so.

I find the dolls are a wonderful, healing thing to me. When I feel to bad for anything else, just setting them next to me is a comfort. I've learned to sew, crochet, and knit, as well as do face ups, since I started the hobby. I'm still amateur at all of them, but I find it very rewarding to do new things, especially things I can do on my couch. I've always found that creating something or doing a job with tangible results is very satisfying,but it is double so now that I am so limited.

My local group is full of people with chronic illness and various types of disabilities, and we've kind of come to a similar conclusion, that the people who need something you can do while hurting or exhausted, or sedentary are attracted to this hobby, if it suits their interests. Add in that there can be this online social aspect, too, and that many of the people you meet in person understand you might have different needs and I'd say collecting BJDs is awesome.

 

It's odd I never really think of my disease as a chronic illness but I suppose it is. I live with Multiple Sclerosis and diabetes. It creates challenges in every aspect of my life.

 

I have all of that except the Fibro so far... that stuff suuuucks. I'm glad we all have this community.

 

I also have chronic pain + fatigue stemming from hypermobility. I've always had it so I'm mostly pretty used to it but it is getting worse as I get older, and I do now sometimes need to use a cane when I'm out for long periods. I've also had OCD since childhood but it's actually pretty well under control now.

It has definitely influenced my life in negative and positive ways. The negative ways are probably obvious :p especially since I wasn't diagnosed until fairly recently and so spent much of my life constantly berating myself for being lazy, haha Having a diagnosis has definitely helped me to be kind to myself and work around my limitations, instead of trying to push against them and being angry at myself when I couldn't.

On the positive side, my experiences with OCD led me to take an interest in mental health in relation to my research; I have an MA in mental health law and am now doing a PhD in a related field. I'm very lucky right now to be doing something that allows me to work flexibly. I hope that I'll be able to keep working as a researcher and lecturer, but my lack of stamina does worry me a lot

I only started collecting dolls recently so I can't credit them with anything therapeutic for my part, but it is nice to have something you can do at home, in your own time, and share with people online

 

Another sufferer of Fibromyalgia here, as well as Chronic Fatigue, Low Blood Pressure and Depression. I'm basically in constant pain, all day, every day. I also tire out really easily, and find it difficult to do basic tasks. I have a crap ton of hobbies to help keep myself sane with how isolated I feel, but rarely have the energy to enjoy them!

I had many teachers dismiss me as being 'lazy', because I'd lay my head down on my arms on the desk during class. They thought I wasn't paying attention. That was one of the only ways I COULD pay attention. My gym teachers complained I wasn't trying hard enough. When my heart felt like it was going to explode out of my chest. I'd taste blood at the back of my throat (which is apparently caused my a mini heart-attack...). When I staggered around, clutching my heart and struggling to get enough to breathe, they'd complain I was being 'dramatic'.

'Brain Fog' is another lovely side-effect of my condition, and it's one of the things I find most frustrating. I like to write, and brain fog makes it extremely difficult.

But! Dolls help take my mind off of things. I can focus on them, cuddle them, talk to them, plan outfits, plan families and backstories, etc, and it helps.

 

-waves- PCOS, gallbladder removed which left me with postcholecystectomy syndrome, thyroid, depression, anxiety, and arthritis. I've also got chronic insomnia and I've been switching anti-depressants so it's been a crazy year. My last meds had me puking and miserable just about daily. Luckily, it's cleared up on the new meds!

 

I have chronic illnesses and I suppose a disability or two as well, but I rarely think of them that way. They're just stuff I need to work around on a daily basis.

I have semi-controlled asthma, a compromised immune system (I get sick easily and take forever to shake whatever I've caught), Reynaud's Disease, MVP (mitre-valve prolapse), severe arthritis in my wrist and hips and chronic tendinitis in one forearm. From 3 TIA's (min-strokes) I have screwed up spatial reasoning, prosopamnesia/agnosia, mild weakness in my left arm and leg and CPSP (central post stroke pain) in my left leg from the knee down every day, 24 hours a day, as well as intermittent pain in my lower abdomen that I never know when it'll happen or for how long (because CPSP is a jerk and will randomly migrate to other parts of the body just because).

I'm also anaphylaxic to hazelnuts/filberts and bee stings, which, when combined with the MVP, means that I can't use an epipen should I accidentally eat a hazelnut or get stung by a bee. The epipen will either do what its supposed to and buy me time to get to a hospital before I suffocate or it'll speed my heart up to the point where it puts me into cardiac arrest. Wheee! Choices. Additionally, I'm allergic to eggs which, aside from sucking hard because I like eggs, makes me extremely ill when I need to be immunized for anything as most vaccines are incubated in... eggs (because it's cheap and easy) and shooting something I'm allergic to directly into my body is not pleasant. I also can't process high iron foods properly (docs aren't sure why) and eating even as little as 3 tablespoons of a spinach dip or 4 pieces of sushi with seaweed wrap will give me intense stomach cramps for about 30 minutes (the time of the cramps will increase based on how much I ate).

For me, my dolls have helped me re-train my brain to create new paths for spatial reasoning by working out adjustments to very simple patterns. I still understand how to follow a pattern and can do that no problem, I just can't make my own like I did before that particular TIA because I don't understand how pieces fit together anymore. My spatial reasoning is about as good as it's going to get at this point and I still make mistakes with things that require that skill about 50% of the time. And on days when the pain in my leg creeps into prescription meds territory, having a doll to cuddle with while I'm higher than a kite is nice.

 

Going on 20+ years with a traumatic brain injury. The primary hit was right frontal orbital but my memory is intact. My emotions are skewed, it's hard to get motivated, and many of my functionality shares commonalities with the autism and OCD spectrum. I've concentrated on my Neuroplasticity and doing what I can for myself but I still can't do it alone. I know I have some sort of seizure disorder but not the insurance to help me afford to find out what kind.

Eating wise if it's green and leafy we stay away from each other. I thought I was sensitive to peanuts but I've eased back on to peanut butter without issue. Now it's watermelon I can't eat.

 

Man, virtual hugs for everyone!

I've also got fibromyalgia (or what the doctor was like, "yeah sure if you insist it's not normal it's fibromyalgia here's some meds"), as well as PMDD, depression, anxiety, sensory issues and some poorly defined mental issues that might be ADHD and/or mild autism. My joints hurt a lot, especially for things like hand sewing and walking, but since I've gone on medication it went from "almost impossible to sew" to "eh I can ignore it long enough to finish this outfit." Which is good, since I do have to make everything unless I can find the cash to commission it. And, well... my dolls might never be the most professional looking, but I'm pretty happy with them!

My favourite doll, Otakar, was a real help to have when I was going through the worst of my depression. Plus, he's a doctor, so even just thinking about him helping me helped a bit, aha..!

 

I have severe bipolar 2, which is dual rapid cycle bouts of mania/psychotic episodes.

I went through alot as a child and young adult. Awareness wasn't a thing back then. So i fell through the cracks. However, I've been under psychiatric care, cognitive therapy, and medications that bring stability to my life. It's amazing. It was hard work, and took many years to manage it. But I've turned about.

I also have a lot of trauma, which doesn't help at all with the mental health side of things.

I wouldn't consider a severe spinal injury an illness, as it was somewhat corrected with surgery. Unfortunately, I have nerve damage from being partially paralyzed. I'm doing well, but I'll only ever be at about 80% back to normal. I'm just happy to be walking and doing things again. Sometimes I feel drained and in a lot of pain... But most of the time, with physical therapy and rest, I'm good to go again.

I see this more as a set back, thank chronic illness. Although that is ONLY my opinion for myself. I understand a lot of views and totally feel for those who deal with some pretty heavy stuff.

 

I have Turners Syndrome, a chromosomal abnormality. I am missing an x chromosome. Everything is there reproductive wise but it don't work. In fact I went into menopause at twenty four. My body doesn't make estrogen, progesterone, and my thyroid doesn't work either among possible heart problems. I also have a few lovely complications that come with that. I have chemical depression as well as type 2 diabetes due to my thyroid and all my other hormones being nonexsistant without therapy. With the proper care though I've gotten a handle on my dperession. I'd say the diabetes is 30, 70. Thirty percent my TS, seventy percent my diet. Which I have been working on and am getting under control through changing my diet. Dolls have been a very healthy outlet for me and I am glad I found this hobby. To everyone struggling with their own medical and mental struggles, keep fighting the good fight you amazing people!

 

I have asthma and depression. Been dealing with the asthma for about 12 years and it's super under control. The depression has been around since at least my early teens, and I tend to consider it more of who I am than an illness. *shrugs*

My Endometriosis and pelvic floor dysfunction on the other hand... it took me several years and ever increasing pain (a few ER trips, several birth control prescriptions, way too many ultrasounds, many courses of unneeded antibiotics for what probably wasn't a UTI) before I got my endo diagnosis. And after two years of medication only treatments, I was referred for physiotherapy and that has been a GODSEND! I was pretty much instantly diagnosed with pelvic floor dysfunction based on my initial exam and after a year and a few months of awkward (but helpful) physio I am no longer in constant pain and going longer and longer between visits (6 weeks!). My pain is in shorter bursts, less intense, and less frequent. I also now know that I still have treatment options if my current ones stop working. I'm much more hopeful/positive now compared to 5 years ago when I was pretty discouraged. Women's health care is not taken seriously enough.

 

I have a variety of illnesses of all sorts; mental and physical, emotional etc. I've been sick since I was about 6 years old so I've never known anything else.
It has been fun to decide and customize dolls, even if I haven't done much physically yet. Just the imagining and designing can be so satisfying. I would love to get into hair and nail design, and fashion, and I'm hoping that the smaller scale will help me get some designs out of my head less expensively and with a little less work, at least until treatment helps significantly.

 

I don't know why, but it's kind of nice to me seeing how many people in the hobby have chronic illnesses. I've lived with systemic juvenile rheumatoid arthritis for most of my life, and I have a slew of mental issues as well: Anxiety, major depression, seasonal affective disorder, possibly autism and who KNOWS what else. Honestly, dolls give me something to do and enjoy in my life and it's nice to see that other people feel similarly!

 

I have hip dysplasia, Charcot-Marie-Tooth, and early onset osteoarthritis. Walking is difficult for me without assistance, but I'm not yet wheelchair bound! I'm as active as I can be. Also have been diagnosed with anxiety and depression, most of which stems from my other conditions.

 

Chronic Fatigue Syndrome and Coeliac Disease :/ plus a cocktail of other health problems!

 

Fibromyalgia, Chronic Fatigue, depression, anxiety, partial deafness and migraines. Recently my antidepressants have stopped working as well so I've been really low and generally struggling to cope. I'm focusing on crafting for my dolls to distract myself.

 

I'm reviving this thread to share some more! I've had psoriasis for a few years, but have recently been diagnosed with psoriatic arthritis. I'm also currently trying to recover from "industrial injuries" due to my first job as a full-time seamstress, which mainly involves chronic neck pains. I'm in my early twenties, which doesn't exactly coincide with the image people have of arthritis.

I've gotten back into dolls relatively recently. So far, I love it because it requires a lot less energy to work with them and do something productive. For example, sewing a dress or making a pattern doesn't require nearly as much time or material as it does for a human, and to me, it feels refreshing. I have a lot of fashion ideas that could work for my dolls; now all that is left to do would be to actually gather the materials and take the time to make each piece. Which is also difficult for me since I have many hobbies and lack the funds, but I'm hopeful that I'll get to it soon enough! It feels nice to finish something in a few days or hours rather than a few months. I also find just looking at them very soothing.

Meeting my local BJD community was also a great help in dealing with having chronic illnesses in general. A lot of members in our community suffer from various disorders or illnesses, and while none of our experiences are the same it feels great to meet with people who can relate to what having to live with these conditions feels like. I've even met someone else who has arthritis!

Even if my family knows what my conditions are, they still find it somewhat difficult to deal with on an emotional level, which creates a sort of barrier when it comes to talking about those subjects. I don't feel that at all with my local community. It feels great to be able to talk about our issues without having to face an "I'm sorry", sad looks or the loss of words all the time. It's also a great occasion to share advice if we need any.

 

Crohn's disease, psoriasis, and enteropathic arthritis for me. Also a heavily debated diagnosis of celiac disease (I've been diagnosed, undiagnosed, and rediagnosed, and now my doctors are unsure again. I, on the other hand, have always been doubtful of this diagnosis for several reasons haha - no symptoms, a rather shady initial diagnosis, and I tend to always get worse on a gluten free diet and feel better eating gluten ). Anyway, I'm 19, and I've had Crohn's since I was 6, psoriasis since I was 16, and was diagnosed with arthritis just this March.

I'm very thankful my family, friends, and boyfriend (who has Crohn's himself) have always been supportive of both my illnesses and the BJD hobby! I left the hobby around 2014, but rejoined at the beginning of 2017. Having my dolls really helped me through the Crohn's flare I had this past summer/fall! I had to be hospitalized for a week and tube fed for a couple months due to Crohn's complications, and unfortunately had to postpone starting college (I was hospitalized the week before classes started ). They really helped distract me from everything once I got out of the hospital and gave me something to focus my time on.

I recently started a new medication to treat all 3 illnesses and I'm hopeful it will work well for me! I'm feeling quite good right now, and excited to go back home for summer break so I can see my dollies again If any of you have one/all of these illnesses or have any similar experiences, please feel free to message me about it! I've found talking to people about shared experiences and supporting each other to be so helpful when it comes to chronic illnesses

 

Oh hi everyone! It's really nice to see other spoonies around here

I'm also an aspie! And I've got psoriatic arthritis and sjogrën's syndrome, plus possibly fibro, plus I've had chronic tension headaches for ten years now. Combined with OCD, Persistent Depressive Disorder and severe social anxiety. Fun cocktail! They complicate eachother in 'interesting' ways lmao.

Dolls are a great relief to me as well, they provide a long lasting avenue for my obsessions/spIns, which rotate rapidly and its super frustrating sometimes. Dolls have so many things to them, its a lot easier to stick to them for a while and keep calmer XD
The arthritis really took away a lot of my capacity to work with my hands though, I'm an illustrator so its been really rough trying to get back into things, and I fear working on doll things again (i just recently got super into the hobby again) is probably going to suffer too :/ At least I can chill with them relatively pain free

 

Probably none of this will make sense, I’ve had so many things happen and this will all sound like crazy ramblings.

I suffer from several autoimmune diseases and also Multisystemic Sarcoidosis.

I was fairly healthy child until I went into renal failure at 16 which was the beginning of everything. At 19 I got sick with meningitis and I found out I had yet another autoimmune disease called Intracranial hypertension which causes increased pressure around the brain and eyes which ultimately crushed my optic nerves, this was when I found out I had neurological sarcoidosis on top of the ICH.

As a result I ended up losing my eyesight and was told I would be blind from then on... However, I beat the odds and recovered my eyesight.. it’s not perfect, I don’t have much depth perception or peripheral vision.

Journey continues to 2015, I ended up with bone marrow suppression and pancytopenia which meant I now had blood/bone involvement and I had my spleen removed which was 20x normal size as it was diseased with sarcoidosis

2016 I ended up with no platelets and almost bled out >_< along with getting diagnosed with lung and liver involvement.

Last year I ended up with more neurological involvement and I lost complete vision in my right eye which I’ve managed to regain but colour is somewhat desaturated but hope to have it return.

I suffer debilitating migraines, extreme fatigue, anxiety but what doesn’t kill you makes you stronger!

 

As someone who also has psoriatic arthritis in their hands since about a year, I can relate a lot to your situation! I especially despise anything that involves cutting since it can be painful.

I'm not sure that this will be useful to you, but using spring scissors instead or regular ones helped me to relieve the pain a lot. I especially love my Fiskstar scissors, which were approved by the arthritis foundation. This company has a lot of scissors/cutting tools dedicated to crafts (fabric scissors, precision scissors, etc.), which can be very helpful when dealing with small doll items and clothing!

I draw a lot too. Having to "relearn" how to work with my weird hand was a huge learning curve but once you figure out what tools you prefer and which ones are the more comfortable it gets a lot better. To me, a lot of it has to do with the handle of the tool itself. The larger, the better. You can pad some tools with foam to help with comfort. I also tend to hold my tools strangely because both my thumb and pinky finger are basically useless now.

And finally: continue crafting/drawing! It is extremely important for us to use our joints to prevent them from becoming even stiffer. Crafting/drawing involves a lot of detailed work, so even if it takes more time to do these activities now, they are beneficial to the hands affected by arthritis. Just make sure that you take frequent breaks and stop when it starts feeling too painful. Personally, my current limit is about an hour and a half of continuous "hand work" if I'm having a good day. On the days where I can't draw or write properly, I'll do an activity that involves less precision.

The hardest part for me was to accept that being a craftsman could probably never be my full-time job, as it isn't a viable option for me anymore. Instead, I take my hobbies and crafts one day at a time, working on them a little bit every day instead of a few hours all at once. That way I still see some progress, which is satisfying even though it takes me a lot more time than an average person to do the same amount of work.

 

Hey thank you so much for all the tips! Honestly I've been hoping to run into another creative with similar issues because its so hard to figure out what works and whether or not I can even believe myself sometimes that i need a break.
I never thought to use spring scissors! That's so smart, I'll definitely have to snag some of those! My main issue is tablet pen grips, no one makes comfort grips for those so i struggle with mine a lot :C I suppose I could always try to make myself one though eh?
Anyway, it's really good to hear these things aren't just something I struggle with. I do hope to be able to be a creative full time one day, I don't really have much else I can do, but at least I know I'm not alone I hope things improve for you or at least make themselves a little easier to manage It sounds like you've got a lot figured out so far though, that's awesome! Here's to learning even more ways to make life with this disease a little easier!

 

Ah yes, the tablet pen. I don't draw with it nearly as much because it became quite uncomfortable to use for me too. Nowadays I do most of my drawing and base sketches traditionally (I feel like I have a lot more control with those) and use the tablet for simple modifications in photoshop, like readjusting my sketch or using the cloning tool in some areas.

Honestly, I keep giving the foam tip to people but haven't actually done it myself. I mostly adapted by using and holding my tools in a different way and drawing a lot more than I did in the past few years, but there's only so much my hand can do since it's not very flexible. It may be time to invest in some foam myself and see how well it works for me!

About figuring things out, a lot of it is honestly because I suddenly had lots of free time on my hands. My doctors haven't given me permission to work since I've been diagnosed (chronic neck pains is mostly the reason why). It wasn't very good for me emotionally. Eventually, I decided to dedicate some time to some activities I knew I liked, but hadn't given a lot of time to due to college and having a full-time job right after. I took some yoga classes, dance classes, learned the basics of watercolours and took my dolls out again. This helped me to deal with my emotions and stress. Eventually, I was done with pitying myself and the loss of a potential career as a seamstress, so I went back to school. I decided not to go full-time since I simply don't have the energy for it, but having a goal in mind helps me going through the worst days.

Now I'm itching to actually get a part-time job and gain part of my financial autonomy back, but I have no clue what kind of work I could do. Every job I look at seems to involve a good amount of physical work, looks utterly boring or is completely out of my skill set. At this point I'm considering taking commissions from time to time or work on an Etsy shop with my mother, who has all the sewing skills but doesn't really paint or have knowledge about designing, branding or marketing, which I have a good idea of since I have a diploma in fashion Design. However, I don't have an audience for that kind of work, which makes this idea somewhat intimidating! But having a little bit of side money to finance my dolls and other expensive hobbies would be amazing.

It's reassuring to know that I'm not the only one going through all of this process of figuring things out too! Now I just wish that my relatives would understand this process as well. The fact that I have a chronic disease doesn't mean that I can't do anything or am sad all the time, it just means that it takes me more time to accomplish a task. Mentally, I'm in a relatively good place right now, and it's all because I learned (at least partly) how to adapt to my condition. I hope that, in time, they can see it too.

 

Multiple Sclerosis here. BJD have kept me creating. I love how satisfying finishing a project can be.

 

Hey guys, it's good to hear from you all and know we're none of us alone.

For the last 8 months I've been dealing with something big and as yet undiagnosable and for weeks at a time I can't leave my home from total fatigue; bedridden except to feed myself and wash myself. Luckily I've been able to do that myself, and the local grocery store started doing delivery the summer I got sick, so I can buy food and have it brought to me. They have tested a lot of things but still don't know what's wrong, we have more tests to do. Odds are good it's got to do with processing of hormones or glands- I already have an atypically functioning hypothalamus (autistic) and an endocrine disease (PCOS).

Dolls are something that I can do when I have strength to move about a little but I am stuck in my house. It has been an adjustment learning that I can only do handwork a little bit each day or I will hurt my now very, very weak arms and hands. I think you guys are right to pace yourselves and I need to learn to do that to. I can still have fun, I just need to adjust for my current ability.

I haven't had energy to do much with shoots, but I've been able to sew a little and during the weeks I was able to be upright and a bit mobile more often I could even play with my miniature making. My bestie and I finally finished a dollhouse I made for her realpuki, for example.

 

Same here. I've had psoriatic arthritis for more than 20 years, and the first few years, before I was on Humira, it was really debilitating. The humira literally gave me my life back, but it is progressing inevitably now with age, and my hands have become affected in the last couple of years. A friend bought me a pair of electric scissors which helped a great deal with some big projects I was do where I cut a LOT of heavy linen. I can't use them for anything small or that requires exact precision, but they really help a lot when I can use them. I burned those up, and purchased a more industrial type set that are not as easy to use and are heavy, but they should last a long time. I need to look into scissors like you mentioned for other cutting.

There have been times (especially before I used the electric scissors for cutting the heavy stuff) that my hands would become horribly inflamed and burn and itch, really deep in the tissue. I would literally have to get up in the night and soak them in ice water. That has been worse than the pain.

I have pain elsewhere that bothers me a great deal worse than my hands, mostly in my hips and shoulder, but I've learned to tolerate it, and work around it. I've learned that the worst thing is to become completely immobile when I hurt. I am gentle with myself when I have a really rough day or so, but I try to move at least a little bit every hour or so. The pain is even worse the next day if I do. I realize that this is not possible for everyone, or at all times, but when it is, it is good to push a bit to remain as flexible as possible. There were times early on when it took everything I had just to get up and get to the bathroom, a necessary thing, and I sympathize with anyone who has that kind of pain. It is an awful cycle, because the less you move, the more it hurts, but it hurts almost more than you can bear to move.

It is hard to live with chronic pain, and it is not just the pain part. It can cause depression, and it is so distracting, like having an annoying noise in your ear all day. I firmly believe that being creative in whatever way you can makes all the difference in the world. It has been proven to make one a happier person in general, and it has to help those of us who suffer with chronic illness. Dolls are a great inspiration for creativity.

I am so very sorry. I hope you get some answers soon, and that there is something out there that can fix your problem, or at least make it much more bearable. It is great that you live somewhere that you can have food delivered, and that you have a friend that you can share your doll love with. Hang in there!

 

thank you! They've given me a CPAP to help me get better sleep, and that's kinda helping a lot, I just have to get more used to it so I can stay asleep with it on for longer. So far I'm using it a few hours a night. Fellow spoonies, do get checked for obstructive sleep apnea because a LOT of us probably have it due to our conditions, and it ain't helping our poor weak mortal frames to not breathe well at night. My Doctor said it's probably a result of the loss of muscle tone I have had all over.

 

That is so true. It puts stress on all the systems, such as our heart. It can really lead to more complicated issues than is obvious. I hope you get used to it soon, and can get some real rest. It sounds like you need it, and that will do you a world of good.

 

I have hypermobile joints that cause me to pull muscles and injure tendons/ligaments a lot, so I’m always in pain. I’m under investigation to see if there’s other causes (they said possibly fibromyalgia). It’s annoying... I want to exercise but when I try I get stress fractures or repeated plantar fasciitis. Sometimes I’m on crutches and I have to wear hiking boots with special orthotics all the time (lucky I’m a tomboy and actually love big boots). My wrists have problems too and I have to tape them or wear supports. It’s annoying, but I guess I’m lucky I’m still mobile and can walk, even if it hurts and I grumble a lot!

I also have unexplained anaphylaxis. Allergy tests showed only a mild reaction to almonds. I have to carry epipens and antihistamines everywhere I go, for those moments when I spontaneously go into anaphylactic shock... it’s only happened three times, but I have milder allergies and random hives. I never know if/when it’ll be the big one, so every itch/rash is a massive panic.

On top of that, I've had chronic insomnia pretty much since I was born. It comes in waves, but I can be awake for 72 hours before crashing. Sometimes I have weeks where I only sleep a few hours a night, so I’m often really tired, especially when you tack anxiety and chronic pain onto the insomnia.

I’m autistic and have Adhd as well, so every panic is intensified

I really enjoy working on my dolls because crafting is relaxation for me. It also occupies my brain and stops me worrying all the time.

 

So many bjd owners with illness! It's sad, but awesome we have found a happy place here together! I have sooo many issues. I have OCD, severe Bi-Polar, severe chronic Depression, severe anxiety, and until last year I had hallucinations and voices in my head telling me to kill my family and myself ALL THE TIME. luckily after much trial, error and suffering I found medication that eradicated that! Physically I have rheumatoidal issues, as in my joints SUCK, and I have a hole in my stomach so until recently I could hardly eat and threw up all the time. I'm on medication for that now too and will probably need surgery. Also I have a small tumor in my brain, but luckily it's benign. Still, it's freaky. I've lived my whole life with these various problems so I'm used to it. Still sucks though. I'm only 19 and i'm already tired of living. But I have dreams, so I'm going to keep pushing forward!