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

Luckygirl3

I am not sure there is room for my list of ailments! This multiple pathology is the stuff of getting older.
Anyway here goes!....
- limp due to unmended foot fracture ... use a stick
- acute groin pain for 14 years since hip replacement
- back surgery ... numb heavy legs still.
- back pain
- bad arthritis in right elbow following previous injury
- trapped ulnar nerve
- numbness in hands
- in constant pain
- numerous heart problems and now have stent, pacemaker and had av node ablation
- sphincter of oddi syndrome ... its a problem with bilary system and known as SOD ... I'll drink to that!
- weak bladder ... use pads
- there is more, but I will stop now!

The irony is that everyone tells me how well and young I look ... I have longish very dark brown hair still and very few wrinkles... both hereditary .... and I dress in jeans and no crimpelene! I'd rather have white hair and wrinkles than feel so grim!!

So, some coping ideas:
- blue badge ( apply and give it a go), which also allows you to get a disabled railcard for £20.
- recliner chair ... mine is great
- profiling bed ... also great
- grabbers in every room
- sock gadget
- long handled shoe horn with gadget to get shoes off attached
- shower chair/rails
- Alexa
- supermarket deliveries
- amazon, ebay etc for shopping
- keep up every possible activity, even if it is a struggle ... U3A, singing, art, local events, whatever .. just don't let them go.
- don't give up
- avoid getting glued to TV .... walk round the room while you watch or during ads
- make sure you have every benefit to which you are entitled
- never lose sense of humour
- use passenger assist ... they are great and no-one asks you to say what your problems are
- try not to grind on about ailments all the time. They may dominate your life but when with others it us good to try and put them aside for a bit
- find ways to help others. I still run a choir, do the bookings for the local hall, do the publicity for all local events, write book reviews, run an annual arts festival day. Find things you CAN do and gloss over those you can't

It's all a bugger, but we have to make the best of it
- keep smiling ... good luck!

Lucky girl are you sure you're using the right name? only joking..

GrammaH, it’s such a balancing act isn’t it, deciding when to push through and when to retreat, rest and restore.

I'm paying the price for walking a bit more than usual yesterday, with swollen feet and painful legs..so today has been about elevation and resting.

purplelavender I have fibromyalgia as well. Only this morning someone told me how well I was looking...I'd dragged myself out of bed, forced myself into the car and drive myself to the swimming pool. My legs are so painful, as are alp my ribs and I'm so tired as I can't get comfortable with the pain and the accompanying hot sweats. It really is a horrible disease. I try to push through it, I don't want to be a prisoner, but some days I just give in , stay in bed and pop pills.

What a great thread - so interesting to read everyone’s accounts and reassuring to know I’m not the only one trying to juggle the various needs of various ailments. I’ve had asthma and hypertension for years both of which are currently well controlled thankfully. I then developed atrial fibrillation for which I had an ablation last August which - to now anyway - has settled things down. Unfortunately my oesophagus was nicked during the op which led to severe acid reflux which has been a nightmare to get under control - I can’t take PPIs which is the main treatment so it’s being controlled - to an extent - by diet. I was then diagnosed with an hiatal hernia to go with the reflux, hyperthyroidism (Graves disease) and CKD 3b with a side of osteoporosis to go with my arthritic knees! Trying to juggle all the dietary requirements of that lot has completely removed any enjoyment from the limited food I can actually eat. Apart from that I’m quite good really and glad to be still here to tell the tale. Well done if you’ve managed to get to the end of that sorry tale but I feel better for sharing. I’ll be following this thread closely. Thanks again. :-)

Dear Musicgirl
My OH is very deaf and I am very interested in the hearing aids that you have found helpful.
What make are they and who did you buy them from?
Also do you have a fire alarm for deaf people?
This is a great thread because I am struggling atm. My walking is bad ? Why?
Is it the arthritis
In my knees, the menieres disease or the diabetes?
Have been referred to the physios for assessment but how long is that going to take?

Pix5 you’re definitely included.

Reading all these posts leaves me in awe of the way people are coping with multiple and severe problems. We may be down at times but we’re certainly not giving in.

Newgran59, I thought my volunteering days were over when I lost most three quarters of my sight but I’ve found my niche at our local hospice. Feeling useful is one of the things that keeps my spirits up.

I was advised to work hard on maintaining and developing connections, not just with friends and family but also increasing my range of acquaintances, even just people to nod to. When things are bad as Newgran said, the internet is a great help in that regard and the forums run by charities concerned with various conditions are a great resource for me.

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 .

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!

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.

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.

@Newgran59, Thanks

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.

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.

@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

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.

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?

I have autoimmune diseases, would they be included?

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!!

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

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.

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!

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.

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.

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.