I'm new here & am looking forward to 'meeting' other people who understand what I'm talking about. I'm very fortunate because my daughter is a nurse so she understands & other people mean well but the platitudes can be irritating.
I'm sure we all switch on our bright & breezy faces when we're out but it's quite wearing when constantly told, "But you look so well."
About me, I'm 73 years old...eeeeek! I was first diagnosed with Scleroderma 20 years ago & I've been very lucky because it's progress has been slow. Now it's really taking hold & it's devastating.
I have, as I'm sure do most of you, a lot of pain. My hands are stiff & distorted & my feet are also completely hard. I have all the usual internal problems but I really think the thing that bothers me most of all is the total exhaustion & the foggy brain. I don't feel like me.
This bothers me way more than physical pain!
Enough about me, I'm looking forward to connecting with some of you so I don't feel so alone in this.
My photo is the last one I've had taken of me & it's at my daughter's wedding nearly 5 years ago.
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Yes people say we look well, we have colour. I like your photo. I am 87 and like me you must have collected ways to deal with many things. I find that laughter helps a great deal. I am a member of our U3A (the University of the third age). I take part in several groups according to my interests, one of which is a Humour Group. I suggest you get onto the U3A on line and find out more about it.
Thank you zenabb, it was so uplifting to read your message & thank you for that. As you rightly said we do find ways to manage our condition & laughter is a definite plus. In recent months my toes have become hard & rigid so walking is difficult, but I perked up at your mention of U3A. I shall now definitely look into that!
Hi there, I have had raynauds for 7 years and Scerledema for 5 ,also polymytosis, It was very aggressive to begin with , I really couldn't do anything and had to live downstairs for a year , unable to wash myself, do my hair, get dressed and as good as lost all my mobility. I was given 7 months of chemotherapy tablets in the end to suppress my immune system with high dosage of steroids. My world ended at this point as I had completely lost ME . Now my condition is managed with drugs and I have gathered a few more conditions due to the diseases and drugs, like osteoporosis , Barrett's disease , scarring on my lungs . I'm 52 years young ha!! . I completely understand your exhaustion ,every day is a struggle but we keep going. And when people say you look so well !,!!! It's just not worth trying to explain, my physical face apperance has also changed due to shrinkage of my mouth ( I can't remember what it's called ) , this upsets me the most because it's not me in the mirror. I do try to be positive and enjoy the things I can do but it's hard sometimes. Sorry if I'm moaning it's been ages since I've spoke on here, trying to ignor what's happening I suppose. My advice would be to take every day as it comes, be guided by your body and if you need rest, do it , don't push yourself to hard . If I over do it I usually end up being poorly after . Please please keep your sense of humour , it's a must . My friends would say I'm a happy bubbly person, so I wear my mask well. Take care xxx
Great to get your message Suzy, I recognise so much of what you say. I am so sorry to hear you had such a very bad time & lost all your mobility. That must have been so scary for you! I've lost some mobility but I can get about with a stick, a walking frame or my grandson's pushchair. I too was on steroids for a long time but my consultant said I'd been on too high a dose for far too long so took me off them. I have felt so much worse ever since. Like you I have Barrett's oesophagus so & also diverticular disease. I totally agree, when you're having a bad, in a fog, day there's nothing to do but rest & sleep. As you said, the feeling of not being you is horrible, it's like being outside the world & looking in. Sense of humour is the very best medicine. Take care & please keep me posted with your highs & lows xx
Thank you for your reply , it makes you feel less alone. Wish I had someone near and talking helps but you do feel it gets boring to everyone else lol so don't bother anymore . Keep 😄. If only they could find a cure , I so want me back xxx
Yoh..beautiful...ive also been told i look young...but woe is me ...reyneaud...esophegos problems...internal...thermostat..off..but..i do try to enjoy the day...!!..there will always be someone younger and older...and how lucky we all are on our Birthday..so many never get that far!!.. .but most of the health problems you have ..i have .i am 67..68 in april..i'm always cold..reyneaud...7 years..thermostat off..if i swim i need a life guard to just supervise me..in case i go hypothermia..lol...i do..at the ron jon in florida i had my own private lifeguard....free..too...they don't want anyone drowning..i don't hesitate to get the help i need..and most oblige...fogg brain..don't remind me..got that a few times..can be costly....but i wont go there..!!..You have lots of company..ageing sucks...but ...doesnt life just fly by...??!!.........Flora..nova scotia ...Canada....
I can identify with everything you say. Especially the bit about everyone saying to me "you do look well" when I'm actually feeling rubbish. I look so tanned - the scleroderma is doing that, my skin is tight and I joke about growing my own face lift. The skin on my legs and feet has also gone very dark and is quite a different colour from the rest of me so I keep them covered up in long skirts or trousers - they never see the light of day. It all started out as a red rash but is now dark brown and patchy. It's great to meet other people who understand this very strange condition.
I try to be philosophical about it all - do something interesting on the "good" days and try to forget about the bad ones. The horrible bit for me is feeling like my world has closed in as things I used to do are now such an effort and looking into the future isn't a very bright prospect.
My joints are painful this morning so perhaps that's why I'm getting gloomy. Come on girls - let's paint on the old smile and say "hey ho, all's well with our world." hugs all round.
Hi Betsie, I loved your message, it's so upbeat! I too wear trousers all the time & oh how I understand the world has closed in feeling. In my head I want to be doing things & going places, dancing, playing with my grandchildren etc. but my body says NO!! It is a very gloomy prospect so on my better days I do try to dress well & slap on some lippie 💄. Some days though I don't get dressed at all.
As you said, hugs all round & we all need to share our good days & bad days to lift each other's spirits. Take care xx
Thankyou for your reply Betsie , much appreciated. I think it's winter taking hold for this negative attitude from me, roll on summer 🤗. I just fell so tied to the house as such a effort to get out , heat pads , layers of clothing etc and then when I finally do get out I want to go home, perhaps you understand. Hoping you having a better day today xxx
I also know about looking tanned ha!,,, makes you look so well. When summer does eventually arrive I look tanned in a day, you think that would be a good thing but you know it's false. My hands having a crap day , loads of attacks dispite all precautions, so painful, swollen and useless. Think I wanna sleep until May lol xxx hugs to you 🤗 Xxx
Great to meet you and welcome to the forum. I'm 45 years old and was diagnosed with scleroderma and PH a year ago. Completely know what you mean about people's reactions when you have a so-called Invisible illnesses. They'd feel different if they were living life in our shoes !! Here's to more good days than bad ones 😀
I can relate to all of what you have all said, yes some days are really rubbish! Iv had one of those today I'm in the process of coming off one of my drugs ready to take part on a clinical trial at the Royal Free in London for my PH, I have had the most almighty headache to add to the endless list of other aches and pains. But hey ho tomorrow is another day, got to be better, we must keep reminding ourselves of this!!!! And underneath all of this we are still who we are ( well nearly) 😃 Xx
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