This year I am taking part in Invisible Illness Week, which is raising the profiles of those living with an invisible illness / condition during the 28th September until the 4th October 2015.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
Oh where to start! Initially I was diagnosed with Postural Orthostatic Tachycardia Syndrome but that was changed to Severe Autonomic Nervous System Dysfunction (Dysautonomia). In the same year 2011 I was diagnosed with Ehlers Danlos Syndrome Type 3 – Hypermobility. I also have the skin condition Hidradenitis Suppurativa, Eczema, Arthritis, Meniere’s Disease, Ptosis of unknown origin (some doctors think it is Myasthenia Gravis) and currently I am dealing with the symptoms of raised Prolactin.
2. I was diagnosed with it in the year:
Well the first concrete diagnosis of EDS (Ehlers Danlos Syndrome) and PoTs came in 2011. Since then I have been collecting conditions. The ptosis first started in January 2007.
3. But I have had symptoms since:
Birth really. As a baby I had excessive thirst, as a child I had “growing pains” which was EDS and I have always had very low blood pressure etc.
4. The biggest adjustment I have had to make is:
Giving up work and also realising that I will never be able to visit some of the places in the world I have longed to see, since I was a child.
5. Most people assume:
There is nothing wrong with me and that I enjoy being a lady of leisure!
6. The hardest part about my mornings are:
The fact that they normally start between 1am – 3am and I am usually struggling to get my pain back under control.
7. My favourite medical TV show is:
I have quite a few House, Greys Anatomy, Critical, 24 Hours in A&E and probably many more. I am a sucker for medical shows.
8. A gadget I couldn’t live without:
That would be a fight to the death between my chromebook which keeps me connected to the outside world and my hair straighteners.
9. The hardest part about the nights are:
They are long. It can be hard to get the balance between getting enough painkillers on board to stop the pain and not taking so much that it interferes with my sleep.
10. Each day I take……. tablets:
I have never been bored enough to count, so I was quite shocked when it came in at 40. That would be a good day and doesn’t include oramorph or any non prescription medications I would take on a bad day.
11. Regarding alternative treatments I:
I have no view either way. As long as they aren’t draining a person’s resources and they help them deal with their condition then it’s entirely up to them. I have tried a few and found either they make no difference or make me worse. Each to their own.
12. If I had to choose between an invisible illness or a visible one I would choose:
I would choose an invisible one. I saw the number psoriasis did on my husband a few years ago when he had a really bad flare up. People treated him like a leper. I would never have the strength to go through that. It is bad enough the raised prolactin is causing me to have spots.
13. Regarding working and career:
I stopped working in 2008 as I was just too sick to manage. I loved my job and it has been one of the hardest things to get my head around as I was left with a feeling that I was utterly useless.
14. People would be surprised to know:
That despite all the shit health wise that seems to keep coming my way that I still have a sense of humour and enjoy my life. You have to make the best of what you have got.
15. The hardest thing to accept about my new reality is:
Other than no longer working was how quickly your so called friends disappear. I am amazed that even after all this time people I thought were good friends can let you down so badly. They tell you “let me know if there is anything I can do” and then disappear as quick as a flash!
16. Something I never thought I could do with my illness that I did was:
Manage to create a blog with a decent following.
17. The commercials about my illness:
There are none, my conditions are rare(ish) so we don’t get the massive ad campaigns and most doctors are either disbelieving or want to learn from me.
18. Something I really miss doing since I was diagnosed is:
I had to give this up in 2008. What I really miss doing the most is walking my dogs on the common. I used to love walking for hours at a time. Unfortunately I kept collapsing whilst I was out in the middle of nowhere, so initially I gave up doing it alone. Then it started causing me a lot of pain in my joints, so I had to give it up completely.
19. It was really hard to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
Get up early and walk my dogs for a few hours. I would then go and visit my family and meet my sisters new son. I would then have a massive slap up meal with my husband and then dance the night away at an exclusive club.
22. My illness has taught me:
Not to be so judgemental of others, compassion and empathy
23. Want to know a secret, One thing that people say that really bugs me is?
“You’re looking really well”, this really irritates me when I know I look like a bag of shite and would Casper the friendly ghost a run for his money.
24. But I love it when people:
Visit me, keep in contact with me.
25. My favourite Motto, quote that gets me through the tough times is:
This too shall pass
26. When someone is diagnosed I’d like to tell them:
It’s ok, you weren’t mad, you weren’t making it all up. However the battle isn’t over. Every medical encounter you have maybe a battle. Never give up.
27. Something that has surprised me about living with an invisible illness is:
That you can have a decent quality of life. Life is obviously completely different from what it once was but that doesn’t mean your life is over.
28. The nicest thing someone has done for me when I wasn’t feeling well was:
That would be my husband, when I have been really sick he has taken time off work and looked after me. My mum also many years ago took one look at me (I was at work) and told me she was coming up to stay with me, to look after me.
29. I am involved with Invisible Illness Week because:
I am fed up with people making assumptions about me, such as I am a scrounger claiming benefits off the state or that I am pretending to be sick because I like the attention and all the other myths around invisible illness that need to be busted.
30. The fact that you have read this list makes me feel:
Grateful, humbled, thankful.
2 thoughts on “30 Things you may not know about my invisible illness”
Thank you. I needed to read this today.
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Thanks for stopping by my blog. I have just been reading a few of your own posts and you’ve had me in stitches. Thank you.
There must be something in the air as I am struggling to cope with other people moaning about situations they’ve created themselves or in the grand scheme of things stuff that is very minor. It maybe because I have been going through one of the toughest years of my life health wise and I am feeling a little unsupported by those who like to dump on their issues on me or….I just don’t know. I think sometimes we hit a point where we are overloaded, I have been here for a while.
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