how do you cope if you have a life long medical condition?

[Fantail]

Just that really. I was diagnosed a year ago with T1 diabetes and hypoactive thyroid. Other medical investigations revealed some minor kidney damage (potentially caused by my pre-eclampsia while pregnant with my daughter) and I also had a cancer scare and operation to remove a tumour from my bladder. Before that after hours visit I hadn't visited the doctor in about 3 years, and not sick with colds/flu either. So I was kind of side-swiped.

Thankfully all of these are now resolved or well controlled and I have great doctors.

But that doesn't take away that I have to deal with it every day for the rest of my life. 90% of the time I think I do pretty well. But then I have a little emotional wobble.

So if you have something similar, how do you cope with the wobbles? When you have a bad day?

It's all about pacing myself. If I'm having a bad day I know if I try and do too much I will suffer more for it. Even on a good day I have to be careful. I have a chronic degenerative disease and know it'll get worse but try to look for positives in every day.

It's not always easy. Life can be very narrow. The last two months I have been bed/house bound pretty much as I've had a bad exacerbation. I've been lonely and fed up but it's just what it is so I kind of go with it, do all I can do improve things (ie lots of rest) and appreciate the good.

I've always very much identified with the spoon theory and it helps others who are supporting a sick person too, it can be hard for them to understand.

There are many good things about life and it's about looking for those in every day. I know I'll never get better but I have a lovely family and great friends and a lot of other good stuff.

It does suck though. I'm so sorry for your diagnosis. I echo the advice about finding online support groups, that's crucial. I think mine has pretty much saved my life. It's finding people who just get it. Such a relief.

Thinking of you

I have had a long-term serious disease for more years than I haven't. I think that initially, you need to grieve for the fact that you are no longer a healthy adult but eventually, you accept it. Obviously, there are ups and downs and I'm not saying it is easy but certainly, not all people with long chronic term illness suffer from depression. Many ultimately are happy again. Good luck.

Another spoonie here!

Best advice is take each day as it comes, listen to your body and never feel guilty for saying no to things

I'm also type 1, and have hypothyroidism. I was diagnosed as a young adult. It took a long time to come to terms with but it is now just part of me. For me it's a balance of giving it enough focus to manage the condition effectively (ignoring doesn't work!) but with that control I can then get on, I control it rather than it controlling me. Having people around me who know and understand the condition helps me too. It took a good few years to not feel angry about it, but I got there in the end.

I'm a Type 1 too. I have wobbles I'll be honest, days when it just seems too much to just do the basics to keep me out of hospital and alive, but on the whole I cope because I have to. I get up, go to work, walk my dogs, see my friends. I don't let it hold me back or affect me negatively if I can help it. I've been abroad more times than I can count, I'm learning to drive, I've been promoted at work. If you had told me four years ago I'd be dealing with multiple injections, blood tests, constant stream of doctors and consultants appointments, I would not have believed you. But we cope because we have to I hope you're okay OP

Because I have to.

I know it's going to kill me, it's just when it feels like rebelling against the control I think I have over it.

In reality, there is no alternative but to cope. I try to cope with a smile as it helps me pretend that I'm ok.

I was diagnosed with Crohn's about 2 1/2 years ago (symptoms for many years until the great crescendo of pain), it did hit me like a ton of bricks, looking back I was very down about it and quite scared but now I've settled down a bit, luckily I've not had loads of flares, I think I'm ok, unfortunately I have no medical assistance for it as where I'm currently living the doctors have been anything but helpful. Day to day I'm pretty much okay but when I do feel ill I must admit I get quite depressed about it. I selfishly wonder why I've got it, I think I must have done something to cause it, which is stupid. My 3 biggest fears are 1) my son was premature due to not being diagnosed at the time 2) he will have it 3) that I may need surgery when I'm older. But to answer the question if I'm feeling well for me and my life is going ok I can be as happy and chirpy as the next person.

Me and my friend (I have mental health issues she had chronic pain issues) both found Spoon Theory helpful and it became an easy shorthand way of expressing the bad days and the days we needed to do nothing to rebuild our spoons

My depression and anxiety are better controlled now, but I still recognise that I need at least one day in a weekend to do nothing and give myself space to relax. I also changed my work pattern so I have Wednesdays off (almost everyone in my team including me does full time hours compressed into 4 days) I really appreciate the day off midweek much more than the extra effort of an extra 2 hours on the other days since I'm already there. And I know no matter how bad work is, I only ever have two days at a time to get through.

Last year I was very unwell so had to be aware of my limits, and although I'm doing better now, I'm still aware of those limits and respect them rather than trying to do too much

It has definitely made me not sweat the small stuff and my catchphrase is "today I am well" (when I am well!!). I know mine will get worse which can depress me at times but I try to channel it into making me a better person. It sounds awful but if I am feeling bitter, cranky and horrible because of it, I think to myself...when you die/get really ill from this, will you want friends family to be glad you are dead cos you were an old boot, or to rally round because they love you etc. Utterly selfish and self indulgent but helps me to fake being fun and nice until I actually become so
I feel jealous of people who are well though but think this is only natural.

Not me but dh has a benign tumour, he was first diagnosed 13 years ago. He's had 3 phases of active treatment. Day to day, outside the treatment phase, he's fine.

The difficulty for us is living with the uncertainty, living from scan to scan to find out if he needs treatment again.

At first I mostly ignored it as he's fine day to day I felt like it was attention seeking to bang on about it. However, long term, I've found it's best to be honest with people about the mental struggles, anxiety etc It means they understand and can offer support plus it's an outlet for me rather than trying to squash it all down.

My son has T1d. It's a tricky one because lots of people perceive it as not that big a deal, and think they understand it while actually having no clue. Whereas actually it needs 24/7 management, really hard work, takes up lots of headspace!

The Equalities act uses T1d as an example of a disability - definitely "counts" if you have trouble at work.

I have a problem with my spinal cord which cause neuropathy in my legs. I have good days and bad days. The medication messes with my memory and word recall too. I deal with it by being kind to myself on the bad days!

Oh, and I can really recommend the Libre!

Thank you for starting this thread OP, it's educational and inspiring to hear how you are all coping with adversity.

I have chronic migraine (ie 15+ a month), it may not sound as bad but the world health organisation classes it as the 7th most debilitating disorder.

I totally relate to those of you who say you need to mourn the old you and try and accept your new reality.

sandysman that's very good advice about being cranky and people wanting to help you, I need to be more stoical.

I'd never heard of spoon theory, so I'll look that up.

I guess my only advice would be to try and count your blessings. Other than the migraines I do have a very good life, and most people have some sort of cross to bear.

And never give up on finding a cure, or trying something new. I'm always reading about something that's really helped someone and always have hope there's something that will be invented which will eventually cure.

Good luck to everyone on this thread x

I've got MS. I just take each day as it comes and get on with it. No point in sitting around being miserable about it.

Take my tablets an pain killers if I need them, I have arthritis so some pain is expected but varies from day to day, high blood pressure, high cholesterol (not very good with statins)an type 2 diabetes so also need to watch my diet, most days I cope but have the odd off day when I just want to be normal

I have a chronic and incurable auto immune disease triggered when I was pregnant. I've had it since I was 29, now 51. I don't take meds for it, I'm holding those in reserve for when I really need to throw stuff at it.

I get really tired, and when I'm hit by viruses, colds, or have done long trips back to the UK, then I pay for it later. I know when it's getting bad, and luckily, dh just lets me veg out and doesn't moan when I'm feeling wiped, and he gets something cobbled together from the freezer to eat (normally one I've made earlier anyway).

I try and forget about it for the most part, and I've never done lots of partying/life in the fast lane anyway, so a slower pace of life suits me. I could have things that are a lot worse than what I have, so be thankful for small mercies I suppose.

I have spinal arthritis - diagnosed earlier this year. I thin I am still in the grieving phase TBH although good weather has eased the pain I am not looking forward to winter.

My good friend has Diabetes and she said she would rather have that than arthritis, because at least she isn't in daily pain. I look at her and think at least I don't have diabetes because she has to think about it all the time and inject etc.

I'll off to look at spoon theory.

Thank you for sharing. It is really helpful and inspiring to hear how you cope - just normal people doing normal things 😀

There are definitely some positives that have come out of my diagnosis. I'm now a size 8 and I've learnt a lot about food chemistry and get to cook a lot (which I love and find relaxing).

The cooking has actually lead to a part time job cooking for an elderly couple, kind of gourmet meals on wheels!

I have epilepsy which came from nowhere when I was 26. Luckily its very well controlled with meds but I need to be very careful about remembering meds and getting enough sleep- hard when you have small children! My meds make me incredibly tired and sometimes cause problems in regards to my speech but I have gotten used to it now, try not to worry about the 'threat' of a fit as havent had one for years.

Love the spoon theory, thank you so much for pointing us in the direction! Massively helpful for explaining things to others.

Loving all the stories, makes me feel like I'm less alone with my spoonie illness!

Thank you all for sharing!

Sending spoons to you all 🥄🥄🥄