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

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?

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!

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

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

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.

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!

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.

My main problem is that I am very hard of hearing with an unusual type of hearing loss but very high-tech, eye-wateringly expensive hearing aids really help. I also have lipoedema, which especially affects my legs and abdomen.

Valdali, I find the Connevans website very helpful for any technology for hearing problems. They have very good customer service and are happy to answer any questions I have.

Greyknitter, do you follow the FODMAPS diet? I had quite severe IBS but have managed, very gradually, to reintroduce many foods. Don’t give up hope.

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.

Teabag - The microphone sounds interesting, I must look into that (I have bluetooth aids).

Yes, me too, I would rather tell people at the first opportunity, then they understand if I ignore them (don't hear them) in the supermarket or park, and, like you say, give odd answers.If someone is saying "she never speaks, she just ignores me if I say hello" I always say- but she may be deaf- people don't always think.

Oh Valdali, how I agree about the tiredness, socialising is absolutely exhausting. I use a Roger On 3 (stupid name imo) which is a microphone that bluetooths to my hearing aid and does help with hearing as long as I’m only dealing with one or two people and there isn’t too much background noise. It’s very useful for medical consultations too, not least because it emphasises that I’m deaf. Even so I generally start conversations with people I don’t know well with a comment along the lines of ‘my hearings not good so if I give you an odd answer it’s because I’m deaf not demented’. It seems to work quite well.

teabag I'm also deaf and what affects me most is the tiredness - if I'm socialising during the day, I will be totally exhausted by 6pm. I think it's because I'm lipreading to help my hearing aids, & lipreading is mentally fatiguing.
My hearing is bad enough for a Cochlear implant but on a thorough assessment of my functional hearing (hearing plus lipreading plus guesswork), the clinicians thought that I may get little benefit so advised against. I'm considering going back though as I'm getting quite socially isolated, my main chats come when I walk the dog & although a lot of people speak v clearly for me, it's so much more difficult in the open air, & I get all the dog's names a bit wrong.

Currently have severe spinal stenosis which means I cannot stand or walk for more than a few minutes without awful pain or numbness/pins and needles. Been waiting 13 months for an operation whilst getting worse all the time.

Arthritis in hands which means no grip ( can’t open a jar to save my life) and pain in thumb joints.

Stenosis puts pressure on my bladder so go to the loo much more often which is annoying .

Have type 2 diabetes but is very well controlled so apart from avoiding certain foods is ok.

I feel that constant pain makes me very tired sometimes and sometimes low in mood. It makes day to day life difficult and unpleasant and if I want to have a day out with my family my daughter hires a wheelchair for me. I live with my daughters/ grandaughters which is really helpful as I’m unable to do most housework.

I still work part time in a sitting down role and can still drive so I can be a bit independent as long as I can park very near the building I need to be in .

I try to still enjoy things and have lovely family and friends so count myself lucky . Would definitely be interested in others experiences .

I also have CKD stage 3. I feel more tired and seeing what fancyflowers wrote I can see why I feel fatigued now and then.

Astitchintime

Another osteoarthritis, stenosis, fibromyalgia and CFS sufferer here……..just spring cleaned the bedroom and I know I’m going to pay for it later. But, I woke up this morning, many others didn’t and I am grateful for every day!

Thanks to Teabag for starting this thread and thanks to lucky girl for the ideas!

I definitely agree and have the grabbers and this year did the airport assistance thing when travelling to Spain, it was marvellous, I felt so bad though because I do look ok, other than walking a tad oddly, I’m overweight and inherited my mothers no wrinkle (yet) skin and rosy cheeks!

I think, if nothing else, this thread might help us keep our peckers/chins up!

🥀 🩷

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.

Goodness, your life seems remarkably like mine!

I have the mental will, my mind says go, go, go and my body says, no, no, NOOOOO!

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!

That’s a good idea Cossy, here are my ailments. I’m pretty deaf and have limited sight which doesn’t work well with Developmental Coordination Disorder. The tinnitus I’ve had for years is getting worse and waking me up at night with a noise that sounds like heavy machinery. I have generalised osteoarthritis and though a hip replacement 6 months ago greatly improved things my feet and ankles are now giving me increasing problems and limiting my mobility.

I’ve had to give up all my group activities as I can’t hear what anyone’s saying and my exercise class has gone by the board too as just getting there causes too much pain. I can manage reasonably well on familiar ground but now find it very difficult when I’m in less familiar surroundings and nearly got knocked down by a cyclist speeding along the pavement on my way home from my COVID jab on Monday. It didn’t do my confidence any good.

I do still volunteer at my local hospice, in a back office. . I’m lucky to have a small cafe that I can walk to where I meet up with friends, one at a time, using a microphone to boost my hearing aids. Technology is my life line, enabling me to do my shopping and keep in touch with people.

On bad days I’m grateful that I can still listen to audio books by choosing the narrator carefully and streaming them through my hearing aids. They make a great distraction and stop me ruminating on my difficulties.

Maybee, I know just what you mean about the tiredness and the sense of overwhelm especially when it comes to clearing out. I now try to get rid of one thing every day, either throwing it away or putting it in the charity shop box and am beginning to see a real difference. Sometimes I manage several things in a day and feel triumphant!

I have stage 4 kidney disease, which gives me restless legs at night. It's a horrible condition, because it prevents me from getting a good night's sleep, and consequently I am tired during the day.

The kidney disease also gives me fatigue. I have the occasional good day but they are few and far between.

On a positive note, I have just had my first iron infusion, so in a few weeks I hope to feel more active.

As Luckygirl13 said, no one can tell that I have an illness. When I go on the bus to town, I often wonder about my fellow passengers, who all look fine but many probably have invisible health issues.

Good luck to all of us struggling.

I have Osteoarthritis, atterlacasis, diverticulitis, ectopic heart beats plus other things. I cope well still drive and I am still active.
I think starting this thread is a good idea posters can say how they are feeling. I don't look like I have anything wrong but yhe pain depresses me some times.

Another thing .... I realised that some of my problems might have a hereditary element - high cholesterol, osteoporosis etc. so I talked to my 3 DDs about this.

They all went to GP for a health check and one has had a DEXA, all had cholesterol check etc. All now on calcium and vit D, one is on a statin.

At least my situation might help prevent them getting into the same fix, or at least delaying them a bit.

Another osteoarthritis, stenosis, fibromyalgia and CFS sufferer here……..just spring cleaned the bedroom and I know I’m going to pay for it later. But, I woke up this morning, many others didn’t and I am grateful for every day!