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

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.

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?

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. :-)

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.

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.

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

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..

Angina, athritis in knees, feet, back, neck, fingers.
fall quite easily...without trying..leg ulcers, one is taking a lot of time to heal,have to wear compression stockings, the reason why it takes me an hour to get washed and dressed in the morning. I do all my shoping online, and everyone of the Tesco delivery drivers are brilliant, I appreciate them, now I only do what I feel like doing.

Lucky girl are you sure you're using the right name? ... no!

I want to commend all the wonderful people on here who are soldiering on and coping with multiple pathologies that would be unimaginable to a younger person. Pats on the back Ll round!

All ...

I'm 71; have had multiple sclerosis since 1992 (though probably had it at least a decade before that), and since some of my symptoms are so atypical I still have ME written on my GP's notes as well.
I also have macular degeneration - thankfully only in one eye - for which I've been having monthly injections since 2019. Oh, and there's the dodgy kidney which occasionally causes problems (stones, UTIs), plus I have IBS
And most recently I've been diagnosed with unstable blood pressure, high cholesterol (which I've managed to reduce with a combination of diet & medication), and 'something' going on with my heart ..... yes, I know, I'm greedy!

Anyway, I have lots of hints & tips that my husband & I have come up with over the years, but no time to post them today as we have our granddaughter staying this weekend.

I've had primary breast cancer 3 times....so 3 lots of treatment over 12 years ...I continue to take estrogen blocker medication .....I am left with
Chemo induced Peripheral neuropathy
High cholesterol from meds
Joint and muscle pain
Gastritis
Recurrent utis
Fatigue
Osteopenia
Tbf probably sounds worse than it is ....I have a blue badge and get pip ....still manage a couple of days work a week amd enjoy holidays and spending time with my GC and my 90 year old mum
I'm 61.... enjoy my life .....always looking forward .....I won't make old bones...chemo has unravelled my dna too much....and always the fear of secondary cancer hanging there ...but i guess you have to live the life you have ...as well as you can....I'm 6 years post my 3rd diagnosis so grateful for the health I have...and some days I'm really good

It somehow helps to know that we aren't alone in being in pain. I'm thinking about you all now.
I've got " crumbling vertebrae, collapsing discs and a degree of scoliosis"....the exact words of the doctor. If I could be a lady of leisure and spend my life lying down I would hardly have any pain at all.
But every single thing I do, even just getting up in the mornings and putting the kettle on, causes me increasingly horrible pain. It's reached the level now of affecting my walking and I'm absolutely fed up with it. The pain is utterly sickening. I take co-codamil which sometimes helps but sometimes doesn't. And the amount of relief is getting shorter, half an hour if I'm lucky.
I have a reclining chair which helps. Also a large sofa so I can lay flat when the pain is really bad. Nothing seems to help except for the laying flat. Like I said, if I was a lady of leisure.....
I've tried asking for other painkillers, or more painkillers ( I'm rationed to three and a half per day) but have been turned down.
Surgery would not help apparently, and I'm too old anyway.
So, every day is a struggle. But I realise from reading this thread that there are people much worse off than me .
Sending fervent sympathy to all of you.

When I started this thread I didn’t know just how much some Gnetters are having to cope with; what with pain, lack of mobility, fatigue, the constant balancing of one condition against another and then having to put up with being told how well you look! I don’t think any of the medics realise just how difficult it is. If ever there was a need for holistic medicine it’s here.

Talking of pain, I’ve just started an audio book on mindfulness as a way of reducing pain. Has anyone tried this? Found it helpful?

I have a list of things that are wrong and I am fatigued. I decided today I could not leave my front garden, I have cleared weeds and dug the earth over and dead headed roses. I got down on the grass but arthritic knees make it hard to kneel. I have got it done thankfully. Now laying on the sofa.
I feel lucky to be able to do things, and I still drive.
I have a little rant though. I cannot stand it when people say Oh I'm less say, 70, I am so healthy I do this and that, and then they compare themselves to others and say things like Oh she/he never does anything, no wonder she looks so old, plus other things. These people are fortunate and should take time to think others might not be.
I do not look ill, and I am lucky to be able to get on with my life but like others I have hidden disabilities and believe me I do get tired.

Many thanks for this thread and to all who have posted. I have an incurable cancer and several of the problems others have mentioned but learning about how so many of you are handling so much, and often so much worse, than me has had a strong impact on me today. I have a lot to think about now but at the moment it's making me feel -sod it, I'm just going to get on with it! If you knew me, you'd see that this is a real positive. Thanks again.

Does anyone else ever feel you have outlived your body!!??

Well, mine is annoying and frustrating me!

Tried to do some gardening this morning but had to admit defeat before the task was finished.

Luckygirl3

Does anyone else ever feel you have outlived your body!!??

Metamorphosis sounds appealing!

Luckygirl3

Does anyone else ever feel you have outlived your body!!??

Not yet as I can still do things even though it leaves me achey and fatigued. I know its coming though.

JANH

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.

My youngest D was diagnosed with Psoriatic Arthritis before she was 30.
It broke my heart to see her limping even at her wedding later that year. 4 years of an immunotherapy drug trial were magic, but she was told No babies so she came off the drug and found she had (possibly connected with the drug therapy) Endemetriosis.
IVF was planned but fortunately nature intervened.
She now has 2 little pocket rocket boys (7 and 4) and I am full of admiration for how she copes with keeping up with them, a job, and the psychological implications when the Psoriasis flares up although fortunately the only unavoidably visible signs are (usually) her forehead and arms.
Very debilitating for a young woman of now 44 now the PA has come back - how she runs after them, gets up and down from.the floor, carried them when they were toddlers , mind boggling

Both knees replaced. Ongoing physio, exercise, walking.

RosesMawagainI sympathise with your DD.I have PA and it’s horrible the flares are hard to cope with.I also have PMR and DDD,but still live to tell the tale.😀

Having a very painful day today, currently lying on the bed after taking painkillers. I have worked this morning and it has been really hard to walk.

However I have recorded a phone call from the hospital with a date for my spinal op which will be in 4 weeks time. I’m really anxious about it (never had a GA and have a bit of a phobia of it) but if it works it should radically improve my situation

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