LUPUS UK
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A story for friends, family and others

I posted this experience of my illness on the mighty website that lets people publish experiences and thoughts of their illness. Hasn’t been published or anything but I wanted to share on here as well. I think we sometimes forgot how we need to write down our thoughts and feelings or it will eat us up and how we forget how serious our illnesses can be.

For friends, family and other

Over the years I’ve realised that I never have explained the struggles of my day to day with anyone and how I try and cope with my illness so I decided why not give it a go for once, sometimes I find writing it out is a lot easier than speaking face to face.

When I was 17 I got diagnosed with mixed connective tissue disease (if you google this find out a lot more information which a lot of people don’t bother to do), this means I have more than one autoimmune disease such as lupus, rheumatoid arthritis and a few others. I was put on steroid drip for a week and in and out of hospitals for years I was a size 6 no strength, no energy I couldn’t even open milk with my own hands, I was a 17 year old in a 80 year olds body, the arthritis made my elbow bent I can’t straighten it, my fingers are slightly deformed, I have scars on my chest from lesions that came with the rashes formed hard skin that took months to heal. One morning I remember sitting on my bed trying to get ready for college and I wanted to put my hair up I must of spent 30 minutes but my hands wouldn’t let me do it, I just sat and cried thinking I was at a festival a year ago having fun with my friends and now I can’t even tie my hair up. That made me realise this was serious I really need to start looking after myself I’ve been on lot of different medications, sadly the two that helped the most did the most damage, I live on painkillers everyday I’m surprised I’m not addicted. I had to buy a new pillow and mattress because my old ones hurt my body so much I was waking up in horrible pain. I can’t wear high heels anymore it causes unspeakable pain in my feet that I could near cry, I have probably bought to many vitamins, creams, help items and whatever else to ease the pain and maybe give me a slight boost of energy. I do know now what helps and what doesn’t work after my bank balance crying lol, when I couldn’t sleep I would google how to sleep with pain and buy random things to maybe help.

10 years on and I got better with the right treatment still hospital appointments one for my lungs, heart, eyes, blood work, and my consultant twice a year. I still have got sick within that time, I had to drop out of university because my body was covered in rashes my stress levels were through the roof I was getting sicker again and also because of personal issues at the time didn’t help matters. I had to listen to my body again and realise I can’t do university with my health because it’s so unpredictable I couldn’t afford to fund another year.

After a few years have a better life more stress free I try and not create or go near drama and I try and take it all as it comes. My week to week is working 5/4 days a week 4-6 hours a day which is hard after work because I can either be sore on my wrists and my hips I get into bed with a hot water bottle and pop a few painkillers and sit there for an hour or so, I feel that if I didn’t try and Work I would go crazy sitting in the house my body doesn’t like this idea though lol, I don’t think my friends realise how serious my illness is becahouseuse when I get a chance to sit in the and rest my body they think I don’t want to know or can’t be bother to see them. I would give anything to have a normal body have all this energy wanting to go here be able to climb a mountain, but I can’t, they are all having kids and doing this and I’m freaking out about all that because of my illness and I feel like I’m most likely going to be left behind and that I don’t fit into their life’s anymore because they are all mums and connect in a different way.

Having a serious illness shouldn’t be a burden on anyone and I don’t make it so for anyone, I don’t ask for help, I don’t complain I get on with it, but just because I don’t complain or ask for help doesn’t mean I don’t need someone to listen or someone to help. My hair is falling out, my teeth are crumbling, my skin itches every day, my hands get blue in the cold, my body hurts every night, I get horrible head aches, I don’t want to get up most mornings to do anything. So when someone says to me most winters “we have come to expect this from you” it hurts and it’s not nice to say to someone when you have no idea what I’m actually going through or how I deal with my life maybe I’ve gotten used to a few things I’ve to do everyday, doesn’t give anyone the right to judge. You will never know you’re self until you go through the same situation, especially people talking to you like they know exactly every detail about it but really they have no clue and never even bothered to ask. Maybe I am selfish with putting my health first but so what?wouldn’t you? If people actually googled MCTD they would see that 20 years ago maybe more people were only given 10 years to live and if they did live past that it would get 13% worse every year so yeah I’m selfish for my health I look after myself so I can stay alive and be there for you when you need me, not when you just need a lift or just to say you seen me or that you need me to do something for you. People need to learn to stop judging what you do not see. If you looked at me in the street you would not have a clue I have any of this.

I wanted to write this for my friends, family and other because I feel they still don’t really understand what it is I have to do every day to survive and sadly all this is only the tip of the ice burg there’s so much more I could explain and write but that will be for another day and maybe another post. Maybe I should of asked for more help over the years, I wish my friends were about more when I was ill and in the house a lot, I wish that this never happened but that’s life and you get dealt a card good or bad, but you get on with it and learn each day. Right now I’m at that time of my life where I think should I have kids now so I can go onto harder meditation? Get the family bit done now so I can get the good stuff so I can then do my career? My consultant doesn’t want me to go onto any new drugs before I have children because the medication can seriously harm the body and it wouldn’t be advisable to get pregnant. I’m at a 50/50 right now in my life where I’ve no idea what I should do or what I can do. No one can really make this decision for me sometimes I wish them magic fortune teller balls would actually work and just decide for me.

I find it very hard to open up and let people see my thoughts and what I go through and how I try and cope, I don’t want anyone feeling sorry for me or pity me in anyway one thing I do want is not to be judged or feel bad anymore that I can’t do what my friends can do.

Thank you for reading if you did read all of this and got some insight into this horrible illness, I don’t have cancer or some other illness I can’t just be cured this is something I’m going to have for the rest of my life and it’s not going to get any easier.

4 Replies
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Hi Jess, I really do know how you feel, not many people know what MCTD means, I have this awful disease as well, it has been round most of my organs, I go to a rheumatologist, respiratory and now waiting to see a gastrologist as its went into my stomach, makes me feel sick all the time, had t beg go for anti sickness tab as I can't lose anymore weight, I thought it was the hydroxy tabs but rheumy doc think it's connected now, you just don't know where it's going to be next. Take care xx

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Thank you for writing this Jess. There are times when it helps to get those feelings out there. I often think that because I spend most of my day sitting quietly in my armchair, anyone seeing me must see a calm and comfortable man who may have a cabinet filled with medications next to him, but who is basically coping and content. They can have no idea that this is a facade, and that actually, I am working hard all the time. Working to get through the present moment, and then the next, and then the next...

Partly it is the "invisibility" of our illness, partly its because we dare not show the truth of our struggle to others, partly because they deliberately avert their eyes and imaginations.

I know that before I fell ill, I did not properly appreciate this. And even today, I do the same whenever I see the news footage of the latest bombing, earthquake or famine.

"Humankind cannot bear very much reality". But we should tell it anyway!

You aren't alone. x

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Thank you Jess, I think a lot of us can empathise with your experience.

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Thank you for writing this Jess. I've always wanted to explain how my illness affects me, in great detail, to my wider family circle but have chickened out because I don't think they can cope with the knowledge. I'm also certain that I would be very upset when some of them still wouldn't be bothered, even when they knew how tough the struggle can be on a day-to-day basis.

Sending you a sympathetic gentle hug x

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