To ask for positive stories of living with chronic illness?

[riotlady]

I’m feeling a bit down after talking to my doctor today and worrying about all the things I might not be able to do- a second child, the career I had planned, holidays, sports etc. Most stories on the internet about people living with things like chronic fatigue syndrome or fibromyalgia are there to raise awareness and seem to focus on all the worst bits- I would really love to hear from some people who have chronic conditions and feel like they live a happy, fulfilling life?

to Guylan for that very articulate account!

Thank you @Guylan that was a really good summary!

I've said before that my life got instantly better the moment I stopped thinking of myself as a fit person who kept not being able to do things, and started thinking of myself as a disabled person who could do quite a lot.

Yes, I think that’s exactly what I need to start doing, it’s a mindset adjustment... I keep apologising for not being able to do things around the house and my partner is just like “remember that you’re ill!”

I have a list of rare conditions as long as my arm and probably shouldn't be living the life I am. I'm married with 2 DC (who were premature due to my health) and a full time job I love. I also run my own business and do 50/50 chores with DH. Some days DH has to take over the lions share but we have a fantastic balance. The house is clean and the kids are happy and healthy. I call that a win, even if some days I do get overwhelmed.

My symptoms can be similar to ME and I have med side effects that can be extreme. Eating well, 8-9 hours of sleep and plenty of time outdoors really helps me

Thanks @riotlady and @PerkingFaintly, glad it was helpful.

“I've said before that my life got instantly better the moment I stopped thinking of myself as a fit person who kept not being able to do things, and started thinking of myself as a disabled person who could do quite a lot.”

I think that is really good advice by perkingfaintly and glad riotlady it resonated with you. I agree it’s a healthy adjustment to make in your mind about your new limits.

It takes time to adjust so be gentle on yourself when you are used to being active and being able to do an equal share of activities with the person you live with, work colleagues if you can still manage some work, and activities with friends. However, you now have new limits and can only do what your body permits and as said I like perkingfaintly’s approach of recognising all what you can still do. Through all of this it’s all human to get fed up at times but it’s mentally healthy to focus on what you still can do and accept what you can’t.

It sounds too you have a good, supportive partner who understands your new limits now which is great.

I also found it really helpful to learn the difference between ‘tired’ and ‘heading for a flare up fatigue’. I’m always ‘tired’. That’s normal with the pressures of life that I have. But when I’m going to flare up, I get what I scientifically call ‘flumpy legs’.🤣 I feel like I’m wading through treacle, excruciatingly heavy limbs, and if I don’t step back at this point and rest then I’m heading for a full on flare where i can’t even walk to the shops, where i get trigeminal neuralgia, I can’t sleep. It’s taken me a long time to notice that trigger point.

I had chronic fatigue syndrome, completely overhauled my diet and I’m pleased to say I now have more energy than I know how to deal with.

Please don’t feel hopeless. There is always hope.

I have Hashimoto’s, celiac, PCOS and possibly fibro, too.

I am regimented to the hilt and am fortunate to be able to afford alternative remedies that basically help me live a normal life.

I take various supplements, I see an integrative health doctor quarterly, I do cryotherapy and photobiomodulation 3/4 times a week (invaluable for reducing inflammation), religiously eat Paleo, I don’t drink alcohol and take a nightly magnesium salt bath.

I work out 4-5 times a week and look/feel good. The only thing I’ve not being able to truly get under control is insomnia, which is the worst symptom for me by far of having thyroid disease. Luckily that only comes in waves these days.

^^I also work part-time and have two very active kids I’m able to play with and engage a solid 90 percent of the time. That wasn’t the case as little as three years ago.

Hi. I don't know if this helps. But at a young age, I had major surgery, and quite a few diagnosis straight after.
It's stopped me from having the career I wanted, but I still went a head and had a child, later on in life. it was my own risk.

I knew if I couldn't have a career, I would risk my health to be a mum.
You just have to learn, to be thankful for small things. Take each day, as it comes and not get angry when you are ill. It only makes things worse.

I have a bunch of chronic conditions, now including long Covid. A pain management course (6 afternoons over a few months) was particularly helpful.

I prioritise what's important to me. Number one is reading bedtime stories, even if I've been napping since sticking reheated meals in front of the kids. Staying in touch with people via online groups. Appreciating nature really helps - I may only manage a 5-min walk a few times a week but I take photos of a flower or similar every time.

I've set up life pretty well so I can be lying in bed and living via my phone, shopping, socialising, doing a fair bit of my work, and wrote a (probably terrible) novel earlier this year.

I try to enjoy good patches and chill out over the times I can't do much. The most difficult is not feeling lazy while our cleaner blitzes the place every fortnight - it gets pretty skanky in between, too. My real friends don't care.

There's still lots of fun in life. When I retire (in 15 years or sooner if health forces it), I look forward to playing lots of computer games and travelling - you pay loads for hotels, might as well have a 4-hour nap each afternoon, right?

I have two extremely rare autoimmune illnesses (my poor parents should never have married - seven genetic mutations led to this shit). But one of the problems is generalized myasthenia gravis, a disease where your muscles give out on you from fatigue so you suddenly have things like trouble breathing and all of the supplemental oxygen in the world won’t help, because your chest muscles are too tired to move it.

I noticed in your OP, you said a few things like, “I may not be able to have a second child.” But... this means you have a first child. I completely understand that these types of blessings don’t erase the things that may end up missing from our lives, and I know how badly it can hurt when you wanted very particular things, but because of our chronic illnesses, it sometimes ends up being a mixture of blazing a new trail of what a good life can be, with the things we CAN do, AND being grateful for what we have at the same time.

I have a great therapist right now and he constantly tells me that my job is to do my best. That’s it. My job is simply to do my best. And some days, that will mean sleeping all day. Some days it will mean a flurry of activity. But I just have to do my best. That’s all anyone has a right to ask of me.

I have MS. I was diagnosed young, with symptoms dating back to my early teens. I never even got started with a career or university. Over 20 years later, I have a wonderful husband (we were together at diagnosis), 2 teenagers and whilst life is not as I imagined, I’m happy. I left paid employment after our 2nd DC when I had a massive relapse and have never been well enough to return.
It sounds silly but I’ve learnt to look for the good in my situation. Pain and disability has meant more time with my family, a wheelchair has given me the ability to get out (and often great seats at gigs! ). Not working allows me to sit and spend the day watching magpies from my bed if I want to.
I try not to compare my life to others and ‘romanticise’ what could have been. We don’t have the money for holidays, new cars etc but that could easily have been the case if I wasn’t ill. I can’t do things that some of my friends can do but would I really want to run the marathon even if I could?!
Find things you can do. Small projects, things that can be done in stages, calls to friends, study, art/crafts... Don’t be to hard on yourself on days you just can’t manage. Delegate tasks if you can, I still struggle with feeling I should do everything as I’m at home - order a takeaway if you can’t face cooking!

Really appreciating all the positive perspectives :)

@RightYesButNo you’re right, I have one lovely child already and I’ve always thought if it turns out I only get to have one child, I’m really glad the one I have is her, if that makes sense!

I have psoriatic arthritis, the online forums and Facebook pages related to arthritis are so depressing! I do not read the comments and posts from members, any more as they just seem to be intent on expressing how much pain they are in, but I find some of the chair based /modified exercise advice quite useful. Also I find regular meditation a positive boost.

I have had Myasthenia gravis for 53 years and I have managed to live an ok life xxxx

Chronic fatigue and fibromyalgia here. Diagnosed about 6 years ago. Coming out the other side now. Been a single parent to two children throughout. At its worst I slept 20 hours a day. Now I’m working part time and back to exercise class. The key is to pace yourself, get the right pain meds combination and sleep when you need to.

For me the key is appropriate pain relief to be honest.

I started with chronic pelvic pain aged seventeen and now in my thirties have had it ever since. It causes intense urethral and bladder pain almost all of the time, makes sex excruciating, I get UTIs after intercourse every time without antibiotics, and I have severe endometriosis also which may be contributing to the pain.

It took years for me to get painkillers prescribed, and a long ladder of surgeries, procedures and interventions. Eventually around six years ago my team settled on a daily regimen of oral morphine plus antibiotics after sex, and drinking a lot of water (the more dilute my urine is the less painful it is).

It still causes me a lot of problems in terms of being unable to have a sex life, but in terms of work and socialising the difference is night and day. With the pain properly managed I can actually go to work every day without having to go back home due to pain. I can make plans with friends without having to cancel due to the pain. It just has increased my quality of life so, so much.

There are downsides, such a large dose of morphine has its own side effects (headaches and tiredness) which aren't always easy to cope with with a toddler and a job. But as my pain consultant always said, there's no real way to help severe pain without some side effects. By the time you're using the big guns for pain there isn't really much that comes without its own problems. It's about weighing up the pros and cons, and for me being on long term pain relief is a better option than being unmedicated and in unrelenting agony day after day after day.

It is possible to live a normal life with chronic health conditions but there are so many variables. Finding a GP who believes and supports you is valuable. I've dealt with a lot of stigma and disbelief over the years but finding GPs who listen and trust and understand what I'm going through has been really helpful. I still feel I experience judgment and stigma sometimes from people who think I look healthy and can't believe the doses of morphine I'm on but that's there problem, they're lucky they don't have to live a year in my shoes.

Oh, I just realised somebody resurrected this thread from six months ago!

OP I have fibro and I think Cfs too although not diagnosed with that. I have good and bad days. I have a full time job and manage my own cleaning, washing etc, some days if I'm having a flare it might be a ready meal for tea and no housework gets done but the majority of days I can get on okay. I do have to be careful, if say I have a really busy day, I need to plan to not do so much the next day. Its manageable, for me. I've had one week off sick with it in the past year

I know this thread is a bit old but some great advice on it and some very inspirational people!

I have a long term illness and still manage a very happy life. I love the advice about appreciating what you can do rather than dwelling on what you can’t. This thread is one to read again and again on a bad day when hope is lacking.

I agree and have had MG for 53 years. Being positive is important