A support thread for those dealing with the ups and downs of living with chronic illnesses, pain or disability.

GreyKnitter

A great thread. Thank you. I’m 73 and have IBS and gastritis which means that I’m often in quite severe pain form the IBS and due to the two conditions together have a very limited diet to help control the symptoms and therefore almost never eat or drink out of the house. Very limiting for friendships.

I was interested to read your post as I was in a similar position. I went to see an accredited dietician, use the Becky Excell cookery books, and found my voice when ordering in restaurants. Even had a row with a WI president who huffed and puffed about me ordering gluten free scones for one of their teas. The dietician gave me the voice I needed to step over that barrier. Also, went to a pelvic floor physio who gave me exercises for 'bathroom' afflictions, if you get my drift. Bon courage!

Grandmabatty

I have type 2 diabetes which I don't manage well. I now have peripheral neuropathy in my feet and legs which are constantly painful. I have issues with balance now too. Because of the pain, I wake frequently at night. I have a very underactive thyroid too. I don't look particularly ill, I don't think. This means people don't think I'm as unwell as I am.

I think looking fine is a huge issue, as often people question one’s inability to walk far or stand for long or perform what seem like easy tasks.

Cossy, you are spot on. Last night was a particularly bad night. However there are others on here who have it much worse

Yes, I would like to join in with this. Thank you.

Cossy yes unseen illnesses cause these issues for me too. I use lamp posts or trees to lean on to get along the road due to balance and mobility issues but I look fine!

Invisible illnesses and disabilities are a real problem. The only ‘advantage’ of being partially sighted is that I use a white stick when out so people do at least know that I have a problem. Has anybody tried using the green, sunflower lanyard that’s designed to indicate a hidden illness/disability?

Yogitree, having to work your way from tree to lamppost sounds like very hard work. Have you tried using a rollator? When my hip was bad I used a four wheel one with a seat and a basket; it made life much easier and I found that people were much more helpful.

I have a terminal illness for which there is no cure or treatment. Nothing whatsoever, just a question of time. But I cope. Recently however I have developed stage 3 piles and the agony of them is unbearable. It has lowered my other symptoms to the pits and this week I have been too unwell even to see my carer for his fabulous help. I knew I couldn’t cope and it makes me so sad. I also have osteoporosis and a crumbling spine but frankly this new pain is making my life a misery and I’m not a miserable person.

Oh lord .... piles are awful. I have had similar. Have you seen the doc? If they are really painful it often means they are thrombosed and a doc can improve them in seconds by releasing the clot. I have had this done several times and the relief is a joy.

Oh 67notout, it can be the most unexpected things that can finally defeat us. I hope your GP, or perhaps the palliative care team, can sort this out for you. Don’t be afraid to demand help and keep demanding. You shouldn’t have to but it seems to be the way of the world these days.

Good morning all, I hope your nights weren’t too bad and you’re feeling up to facing another day. Mine’s going to be a quiet one. I did too much yesterday and I’m paying for it today. I know the advice is to pace yourself but that assumes that life will cooperate!

Just come across this thread. I'm 61 and had to retire early last year on medical grounds. I've got widespread osteoarthritis especially bad in my hands at the moment, lipoedema, hiatus hernia, diverticulitis and shoulder issues now with a torn tendon and bursitis. The arthritis and lipoedema affect my mobility and I still use a stick following a knee replacement.

What a great idea! I have ME/ Fibromyalgia and am 64 yes old. It can be very challenging with a chronic illness/illnesses, as we all know. It would be lovely to connect to others who are also being challenged, and support one another! x

a very interesting thread - and one i can pop on to now and again.
I am an arthritis sufferer - two replacement knees and one hip just starting hurting plus both thumbs.
I am in remission from hidradenitis supportive as long as I take my antibiotics.
I also have type 2 diabetes, peripheral nephritis in my feet, tinnitus in my right ear and chronic kidney disease stage 3.
in 1995 i had ovarian cancer (total hysterectomy but no other treatment) and in 2000 I had kidney cancer (kidney removed but, again, no other treatment).
and I have back pain although I haven't don't know what causes it.
I am registered disabled as I can't walk far an have a motability car.
I only take paracetamol to help with pain (i'm not allowed ibuprofen because of my kidney problem) but sometimes it's not enough.
but I try to soldier on - doing housework is difficult but I try to tackle two things a day while ignoring everything else.
growing older certainly isn't for wimps!! but whatever doesn't kill you makes you stronger!!

I have autoimmune diseases, would they be included?

Can I ask please how fellow sufferers keep cheery and keep their spirits up?
Do you find it hard when hampered by problems such as arthritis?

Thanks for creating this thread.
I have a long list of ailments, take a cocktail of drugs, and have chronic pain.

Struggle to get medical professionals to take all the conditions into account when treating any specific issue.

Was diagnosed with Rheumatoid Arthritis in my 40's and pre menopausal. Had asthma since my 20's, and hypertension joined in. Osteoarthritis throughout, heart issues now too. Am 66, relieved to have reached pension age.
I had to drop all social activity post covid due to issues with hips, but am now slowly rebuilding my life. We bought an EV which has given me back some independence which is a huge help.
So am trying to pick up some fitness/yoga, looking for volunteering opportunities, etc. It's tricky though due to unreliability of pain/fatigue, making it difficult to make it to set timed events.

Really hope to be able to share experiences here and maybe help other gransnetters to live their best lives.

@sixandahalf
It's never easy to stay cheerful when unable to enjoy things we used to. But the best advice I have seen is to stop thinking about what we can't do and recognise all we can do instead.

Everyone seems to have issues pacing themselves which means we end up enjoying something but suffering for it days later. Timing activities can help here, 20 minutes of housework or an hour pottering in the garden might be ok, but then stop, and take an hour off.
That way you can achieve something but still function later!
I'm still learning and still get very down at times, but good days do happen

As my son said, when I told him my shoulder was hurting -‘mum, stop moaning, be glad you have reached your age without any major issues’
I have asthma, and joint pains (probably due to age). Also, raised BP . All under control.
Reading through the posts, I really have no words.

Very interesting thread that I will watch, I have numerous hidden disabilities however what gives me the most trouble is osteoarthritis together with psoritic arthritis, I have a lot of pain.

@Newgran59, Thanks

MayBee70

I just have arthritis in my hands and knees which makes walking painful and for some reason makes my body tire very quickly. Which is, I think, the reason why my house is now like the houses on Sort Your Life Out, which is why I have motivational tiredness on top of it and am currently just looking at the mess not knowing where to start (procrastination has always been my superpower). I can’t keep up with the general maintenance; currently have a dripping bathroom tap and have got to drain all the water so I can get it isolated; as I have a water meter this is doing my economy minded brain in big time. Also have a bowel and bladder that really seem to dislike me…even if I feel ok one of them will gleefully go ‘we’ll see about that’. Bus rides or theatre trips are a nightmare.

After a colonoscopy and Endoscopy to rule out anything sinister, the dr decided have I severe IBS. Going on a long motorway trip or a country walk was frightening as I needed to be near a loo all the time. Now I take 1 Immodium instant 30 minutes before each journey or walk and it means I don't have to worry about the lack of a nearby loo. It's actually transformed my life.

First of all, thank you to the OP for starting this thread. I have suffered from the results of a failed back operation, leaving me with chronic pain which means that I can't walk far, stand still, or sit up straight for any more than a few minutes for the most part. I have to spend lots of time in bed, but over the 25 years since this happened, I have found ways and means of keeping my spirits up. On days when I feel a little better, I manage to do bits of gardening, or DIY, by adapting to the way my body works, for example, rather than bending to do the garden, it's done on my knees, or I'll even lay on the grass and kind of hooch myself along on my side, while collecting up the mowed grass edges of the lawn. DIY is usually done in short periods, so a job that might take a healthy person a couple of hours, may take me several days, but I still get the satisfaction of getting the job done. While I do believe that the internet has caused huge problems in some ways, I'm SO grateful for the fact that I have a laptop, which helps me keep in touch with the world, Gransnet, Mumsnet, friends, etc. I also enjoy sewing, and over time, have made several quilts by hand, doing the sewing and quilting while in bed, which was a huge worry to my DH when we used to have a water bed, as I am forever putting pins in the bedclothes, lol. I am currently attempting to get back to sewing my own clothes, again, due to the limited time I can be out of bed, it's taking me a long time, but when I recently completed a pair of trousers, which fitted a treat, I felt really proud of myself. I research lots of these things on the internet, which we all know can while away hours of our time, but also read, and do jigsaw puzzles online which have become better as time goes on.

I have a wonderful husband, who initially used to look after me, but over recent years he too has developed health problems, so we now do what we can to look after each other. However, having had a laminectomy on his back this week, he came home from hospital yesterday, and it's really brought home to me, how fragile our situation is, as I can't be at his beck and call all the time, to help him, as I simply can't get out of bed a lot of the time. He usually prepares all our meals, and suddenly I am faced with, how do I cope with making food if I'm in too much pain to get out of bed? A very kind neighbour did some shopping for us this morning, but we both hate having to ask for help, so we have some thinking to do, as to how we're going to manage, as we don't really have any friends locally, and family also lives at some distance.

The thing which keeps us going though, is laughter, and as long as we can laugh, we'll get by.

DollyRocker

Too many ailments to mention and fed up with them but staying tuned to this thread. I was reading a science paper today & millions have been invested in the USA into research for regrowing bone and cartilage for arthritis sufferers & it's showing promise!

I was told that when I went for a first appointment about a knee replacement. However, trials were only being carried out on young people and I would probably be too old to benefit by the time it is rolled out.
So I was told by the nurse practitioner, who gave the impression that she was the actual orthopaedic surgeon. But that is another story!

Milliedog

MayBee70

I just have arthritis in my hands and knees which makes walking painful and for some reason makes my body tire very quickly. Which is, I think, the reason why my house is now like the houses on Sort Your Life Out, which is why I have motivational tiredness on top of it and am currently just looking at the mess not knowing where to start (procrastination has always been my superpower). I can’t keep up with the general maintenance; currently have a dripping bathroom tap and have got to drain all the water so I can get it isolated; as I have a water meter this is doing my economy minded brain in big time. Also have a bowel and bladder that really seem to dislike me…even if I feel ok one of them will gleefully go ‘we’ll see about that’. Bus rides or theatre trips are a nightmare.

After a colonoscopy and Endoscopy to rule out anything sinister, the dr decided have I severe IBS. Going on a long motorway trip or a country walk was frightening as I needed to be near a loo all the time. Now I take 1 Immodium instant 30 minutes before each journey or walk and it means I don't have to worry about the lack of a nearby loo. It's actually transformed my life.

I ‘discovered’ Imodium whilst on holiday years ago. I now have the generic version of it on me at all times. I sometimes think that a placebo might work, too, as when I take it as a precaution it stops the panic in my head that goes down to my digestive system. For years whenever I was in a situation where I felt trapped in a lift, my turn in a supermarket queue, on a bus ( or at a bus stop just before my bus was due to arrive and I’d have to turn round and go home) in a cinema or theatre just as the show was about to start and the lights went down my stomach would start to go. It took over years of my life .