“Invisible” health conditions

👍 catch me if you can 😄

I don't have a badge...but when I do I think my response to "Well, you don't look ill" might be, "Well, you do, do you want to borrow my badge" 😉

I was diagnosed with ME almost thirty years ago by an enlightened neurologist, who didn’t fob me off with the usual diagnosis, of the time, of it being a psychological issue.

I was bedridden for a few weeks and for years I did look ill, as I lost a lot of weight and would regularly go ashen grey with really dark grey under my eyes, plus I had a tendency to just collapse.

As I improved, I did wonder if the ‘you look well’ comments were a barb or meant to make me feel better! I think mostly the latter…

I still struggle, having had a relapse recently, but I’m very good at hiding it, I try to be as normal as possible. Of course, the aftermath of that is PEF, or occasionally I hit the deck, but my nature is not to give in and often I overstretch my limit.

Someone on a previous thread mentioned Sunflower lanyards, pins and wristbands, which enable you to have assistance, e.g at airports etc. Mr Squiffy recently applied and was overwhelmed by the help that he received! I’m thinking of applying myself.

Here’s a link:

hdsunflower.com/uk/accessories-pack-1.html

I retired end of April last year due to pain from scoliosis and osteoarthritis.

Recently diagnosed with prolapsed womb (waiting list for hysterectomy is 4 years unless I pay privately)

Last week found out I have haemochromotosis

Just waiting to see what is next?
😕

Squiffy

I was diagnosed with ME almost thirty years ago by an enlightened neurologist, who didn’t fob me off with the usual diagnosis, of the time, of it being a psychological issue.

I was bedridden for a few weeks and for years I did look ill, as I lost a lot of weight and would regularly go ashen grey with really dark grey under my eyes, plus I had a tendency to just collapse.

As I improved, I did wonder if the ‘you look well’ comments were a barb or meant to make me feel better! I think mostly the latter…

I still struggle, having had a relapse recently, but I’m very good at hiding it, I try to be as normal as possible. Of course, the aftermath of that is PEF, or occasionally I hit the deck, but my nature is not to give in and often I overstretch my limit.

Someone on a previous thread mentioned Sunflower lanyards, pins and wristbands, which enable you to have assistance, e.g at airports etc. Mr Squiffy recently applied and was overwhelmed by the help that he received! I’m thinking of applying myself.

Here’s a link:

hdsunflower.com/uk/accessories-pack-1.html

I looked up the hdsunflower.com and was a bit worried that just anyone seems to be able to order the bands and lanyards . It seems strange that this could be used by people who have no need for one.

https://signal-corridor.live/uploads/talk/202609/medium-4wevf1-img-2795.jpeg%3C/span%3E https://signal-corridor.live/uploads/talk/202609/medium-3pr23h-img-2774.jpeg%3C/span%3E

View of rest of garden, (In the foreground there are pots, a strip of planting, and a patio)

Wrong thread, it was supposed to be the gardening thread, sorry GN's.

Floradora9 I looked up the hdsunflower.com and was a bit worried that just anyone seems to be able to order the bands and lanyards . It seems strange that this could be used by people who have no need for one.

Yes, I was surprised about that, too. I expect it’s bound to be abused and then it’ll be withdrawn or people will either have to provide evidence from their GP.

I have COPD and if you saw me walking around the house you wouldn't know. But watch my breathing deteriorate walking up stairs, steps or a hill. Or lifting anything remotely heavy like a vacuum, a bin, a mattress corner to tuck the sheets under, a carrier of shopping etc. I can't get a blue badge because I can walk on level ground for a while before stopping for breaths

Hiya! There is a 'Daisy' card that you can wear that says you need more time. And I'm am struggle with fatigue from meds. I was referred to "Talking Therapies " nhs - and have found that quiet helpful in dealing with my situation. Let's hope you are feeling better soon

Feel like most of you.Have had knee replacement hip replacement neither has given me pain relief. Severe COPD breathing is a real struggle doing most jobs everyday.Have badge but look fit as a fiddle.

I have chronic autoimmune conditions plus other things and get good days and bad days. My response to 'you don't look ill' is ' and YOU don't look stupid ' .

I had no problem getting my late Mum a Blue Badge when she was in her 90s. Neither did we have a problem getting one more recently for my now disabled husband. Both were also entitled to Attendance Allowance.

Grandmabatty

I have type 2 diabetes and have had it for a long time now. I look ok but I am in constant pain with peripheral neuropathy in my feet and now starting in my hands. I have poor balance because of nerve damage but if you saw me sitting down, you wouldn't know

I'm exactly the same but no diabetes. I don't know why I have neuropathy but my legs and feet are really bad and my balance of course. I wondered if it was from an epidural back in 1981 so does anyone else have peripheral neuropathy and also had an epidural?

There are hundreds of invisible conditions or injuries which we carry around, but your skin and your clothes cover all the horrors going on inside! 😲

Chestnut

Grandmabatty

I have type 2 diabetes and have had it for a long time now. I look ok but I am in constant pain with peripheral neuropathy in my feet and now starting in my hands. I have poor balance because of nerve damage but if you saw me sitting down, you wouldn't know

I'm exactly the same but no diabetes. I don't know why I have neuropathy but my legs and feet are really bad and my balance of course. I wondered if it was from an epidural back in 1981 so does anyone else have peripheral neuropathy and also had an epidural?

There are hundreds of invisible conditions or injuries which we carry around, but your skin and your clothes cover all the horrors going on inside! 😲

My son has dreadful peripheral neuropathy but that was caused by chemo. Common side effect and very distressing.

AGAA4

I do think people think if you look well then you are well. For people to believe you are ill it's presumed you will be pale and thin.
I am neither pale nor thin.
I have osteoarthritis in both hips and some collapsed discs in my back and it can be very painful.
I don't think people understand unless they have had all the conditions that others have mentioned.

Similar conditions multiple joint problems and stiffness. Breathing problems and exhaustion. Have to use crutches to walk. All medically investigated and diagnosed.

But l am often told l look younger than my age and sound a lot younger.

A case of what's the matter with you then?.
Oh, l also suffer with arthritis as well.
But l just get on with it.

My granddaughter has an invisible illness she was born with it. In fact since then she has been diagnosed with two/three more illnesses one of which is connected to her original condition.
She has a disabled badge and a mobility car and despite having tried to work her conditions are so unpredictable that employers just ask her to leave when she has to have so much time off or her condition effects her ability to do the job. A lot of the time she looks fine and even pretends she is when she isn't. Both her and I have had a lot of flack over it all. This is why people need to realise that these types of conditions are just as debilitating as some of the visible ones.

I could have written the first post. It helped to read I am not alone. I am experiencing a relapse at present.
ME. IBS, Fibromyalgia, cancer, Prolapse, Hysterectomy, Arthritis in feet,neck, shoulders and spine.Barrets Osophegus, anxiety. I took manage to look ok and try to be positive most of the time. I was first diagnosed with ME 1990. I am now 74 and feeling like age has caught up with me. I am very fortunate to have a supportive husband and GP practice. I am very grateful what I have. Grans nett really is a great helping me on so many levels. Thank you

I really wish there could be more public awareness messages/broadcasts, to educate society on hidden/invisible conditions and disabilities.
Maybe we should all email our local MP's.
You never know it could make a difference.

My daughter was diagnosed with fibromyalgia after a car crash when she was 8 months pregnant .Since then she has had multiple health issues added to the list.She’s on 17 different medications daily and spends most of her life housebound and many days bedbound.
She,s had a blue badge for a number f years but because she is very overweight due to meds she gets abuse from mainly older folk who usually tell her if she loses weight she.ll be able to walk and leave the spaces for them who need it more.
They of course can’t see her joints that pop out of the sockets without notice ot any strain on them Ehlers danners (sp) or the heart issue that makes her collapse on the floor gasping for breath.
I worry about her all the time ,I can’t believe that this is the girl who never had as much as a cold growing up.
She doesn,t deserve it .

Asthma. Other things too but breathing can be very hard sometimes, especially in winter. The majority of people think asthma is just a wheezy chest and a cough. If only.

Samsara1

Cossy I do understand this. I have a blue badge and a Radar key and the looks I get sometimes are very telling. You can't see that I have Lupus (now in remission but it took it's toll), scoliosis, osteoarthritis of the spine, feet, hands everywhere. What they can see is my I hope, temporary gluteal tendonitis as I limp and groan a bit.
I hope you can manage to get out and about and that having a few things like the Blue Badge and a Radar key are helpful.

What is a radar key?

I fully understand , I have Sjögren’s and if people know about it they think” oh yes dry eyes, throat “ if only they knew what the pain from the joints is like , the fatigue, eyes that feel like they have pins sticking in them and itching like you have 109’s of ants crawling over you 😢

I am part of the same club unfortunately. Having had two kinds of cancer, which involved operations and various chemo etc., the thing that affects me most day to day, is that I had a slipped disc more than 30 years ago. This means that there is always a certain amount of pain, but the problem is that I can never know what each day will bring, and can now no longer make plans or buy advance and cheaper tickets to things, as I have to see how things are in the morning, and do not know whether I am going to be able to do much or nothing at all.

I have always hated letting people down, and so these days the only way I can take some control is to organise say a trip to the coast with friends, but it always has to have the proviso that if I am struggling and not able to carry on with the plan, I ring people before 8.30am and have to cancel. I dont like doing that but it is a way that I can at least try to plan something to some extent and friends understand. In my car I am a competent driver and am fine travelling around, but as a type 2 diabetic I now have eye tests of course, and get very uptight getting ready for eye tests, as our brains are so clever, they adjust to any problems you have and so one eye may be deteriorating, yet you see quite well as the other eye compensates. So a lot of stress waiting for tests and hoping that it will be fine. This of course adds to the back problems and I dont sleep well anyway so it is rather a vicious circle.

We all try to look at the best side of things, but when we have to fill in forms you are forced to look at all the downside of things and when you have to put in black and white, that your ability to walk is diminishing, that you cant stand for a long time, which means that you cant spend a long time cooking, or hope to walk round a garden etc.

It drives me wild, as I have always been someone who plans things and take advantage of cheaper tickets or getting things in good time. Yet now I cannot book anything in advance, both for my own sake and also I feel it is unfair to buy a ticket , if they are limited and stop someone else going to the occasion. This particularly causes me problems to such things as Great Yorkshire Show or Harrogate flower show, and in covid times I was basically totally denied any entrance to anything, because everything had to be prebooked.

I still tell myself that I have good days and bad days and leave plants to wait for a "good " day to plant, whereas very begrudgingly I now accept that I really cant get down to do things like that any more. When I moved to my present address I could manage to get to Tesco walking. Not now and without the great "yellow peril" I would be totally stuck.

The worse thing is that when I clearly display my blue badge, and park appropriately , some idiot will either park so close that I am unable to get in or out of the car and can literally be trapped until the miscreant returns. To make matters worse , sometimes it isnt even someone with a blue badge!! You may be sure that they get a tongue lashing from me, a photo taken of their car and the number plate and told them that if they do it again I will report them. The most arrogant man that tried it with me in a big carpark at a hospital got his comeuppance. I try to be a considerate driver , and had stayed well back to allow the lady to reverse out from the parking bay. As she reversed towards me, this oaf drove from the other direction and took the space.! The lady left and I then drove across the back of the car that had taken the place. I asked the man "when did they start allowing blind people to drive?" as it was clear that I had the indicator out, when he took the place. As he just smirked and said well I am here now. So I simply said "oh yes so you are" drove my car directly behind him trapping him in and got of my car locked it and started to walk away. " He shouted "you cant just do that" my reply being that he was not the only badmannered driver that day! After walking a short distance to annoy him I returned to the car and said " Not a good feeling is it!" and left. May not have done much good to his manners but relieved mine! The biggest problem is that I cannot know whether I can just manage to cross the pavement to a cafe or have a walk around, have to just take things as they go. But I am determined to carry on, as long as it is possible and am very much "the little red hen" who says "well if no one will help me I will do it myself"

It is hard accepting help from others, but I need to learn to accept help gracefully, and hang on to the memories of any good days I have. If I see a car in a disabled bay without a badge showing, I will ask politely if they have forgotten to put their badge in , as we are all human and can forget. We know ourselves how hard it is for people to believe we are entitled to park there, and oh how I wish I didnt need those spaces, as no doubt all of us wish we didnt need it, but we do and are entitled to politeness from other drivers . Keep on going folks and do what you can. I am very grateful for the great GN's varied and interesting posts and on those horrible mornings at 4am etc when the rest of the world seems to be asleep I am so glad to be able to come on here and without disturbing my neighbours have something to take my mind off things. I enjoy reading of all the different things people do and how they manage things. How marvellous to be able to tell any news, or to have a rant or a moan, and know that someone out there will have probably been in that position before and can give you some good ideas to help or at least let you know that you are not on your own. Keep up the good work folks and dont let the beggars get you down!!

Delene100

Samsara1

Cossy I do understand this. I have a blue badge and a Radar key and the looks I get sometimes are very telling. You can't see that I have Lupus (now in remission but it took it's toll), scoliosis, osteoarthritis of the spine, feet, hands everywhere. What they can see is my I hope, temporary gluteal tendonitis as I limp and groan a bit.
I hope you can manage to get out and about and that having a few things like the Blue Badge and a Radar key are helpful.

What is a radar key?

A radar key is very useful, in fact essential for disabled people. It enables them to use Disabled public toilets which are locked. We find they are always very clean, roomy and have plenty of hand rails, low sinks etc. some even have showers and adult size changing stations for severely disabled.
You can buy them online for about £5. Well worth it.