30 Things About My Invisible Illness

2 October 2015


It is invisible illness awareness week and my body is making sure I know it. I wanted to do so many posts but I have been flat on my back with a horrific muscle spasm which has made my back so angry. It's taken me all of this week but I have finally finished the 30 things about my illness.



1. The illness I live with is...
Ehlers Danlos Syndrome but also Fibromyalgia, Raynauds and chronic costochondritis as a result of the EDS

2. I was diagnosed with it in the year...
2001 maybe. I cant remember I was quite young so one of the lucky ones to get a diagnosis that early.

3. But I had symptoms since...
Birth. My mum said she knew there was something wrong with me as a baby (I was always weird) but no one believed here and just thought she was paranoid or making it up.

4. The biggest adjustment I’ve had to make is...
Accepting that I cant do everything on my own and that I need to ask for help. Im too damn stubborn for my own good.

5. Most people assume...
That Im lazy and don't want a job. The truth is just living is a job for me some days. Not many people understand how painful just existing can be let alone trying to work as well. My concentration is shocking, I get brain fog, I cant sit or stand in the same position for any length of time and I can't do a lot of things on my own. I'm definitely gonna get hired. 

6. The hardest part about mornings are...
The pain and the exhaustion. I have never woken up and felt refreshed and I usually have to wake up at least half an hour before I actually want to get out of bed so I can move my joints slowly and take painkillers before attempting to move

7. My favorite medical TV show is...
Greys Anatomy. Im addicted. Although I cry every damn time. 

8. A gadget I couldn’t live without is..
 
My phone. It's how I communicate with friends (twitter) and my family some days. I've totally face timed my dad to bring me up food/drink when Im in too much pain to get out of bed. I also set alarms for meds and stuff like that on it too

9. The hardest part about nights are...
 The pain and the insomnia. Being so exhausted you can't do anything but stare at the ceiling but still not being able to sleep is torture. 

10. Each day I take 15-20 pills

11. Regarding alternative treatments
I tried acupuncture and it was great for relaxation but nothing else helps with my pain. I have to take medication to function.

12. If I had to choose between an invisible illness or visible I would choose...
I use a wheelchair when Im out and about so my illness is kind of visible but I still get questioned. People are more helpful when Im in my wheelchair but I get asked if I really need it or told I'm too young etc. So I dunno.

13. Regarding working and career
I've just finished a 4 year degree in Biomedical science which was a massive struggle and now I know that that field of work is just too intense for me to go into. I'm struggling to find work that I can physically do and at the moment but I've been volunteering with a charity supporting disabled children.

14. People would be surprised to know...
That I am in pain every minute of every day. I cannot remember the last time at least one part of my body didn't hurt.

15. The hardest thing to accept about my new reality has been...
That I cant follow the plan I had set out for myself. When I manage to move out I will have to have personal assistants come in and help me with my personal care and cooking etc. I have to plan what I can and cant do. I have to say no more than I want to. I have to cancel plans last minute because my body is too broken.

16. Something I never thought I could do with my illness that I did was...
Graduate university with a 2:1 and go on holiday with my friends. 

17. The commercials about my illness..
Don't exist in the UK

18. Something I really miss doing since I was diagnosed is:
As I was diagnosed so young and have always been ill I don't really have a life before illness. My life has always involved pain. But since my health deteriorated I had to get rid of my horse and I miss him every single day. I would love to get back into horse riding. 

19. It was really hard to have to give up...
Horse riding as mentioned above. Also driving a manual car. I know it's only something small but I loved driving manual and having to switch to an automatic was really hard. It was also heart breaking to have to give up my dream of becoming a vet. That is all I ever wanted and still do but Im just not physically capable of doing it.

20. A new hobby I have taken up since my diagnosis is...
Blogging. It is something I can do from my bed, I can do on bad days and I have made some amazing friends and had amazing experiences. 

21. If I could have one day of feeling normal again I would... 
Oh my god I dont even know. Go for a super long walk. Climb the stairs as many times as I wanted. Do a load of baking. 

22. My illness has taught me... 
Who my real friends are. Thanks for sticking around. It's also taught me to not take the little things for granted

23. Want to know a secret? One thing people say that gets under my skin is...

"At least you don't look ill"
"I don't think of you as disabled"

24. But I love it when people...

Make accommodations for me when we are going out without me having to constantly ask. Understand that I might have to change plans. 

25. My favorite motto, scripture, quote that gets me through tough times is...
"Life isnt about waiting for the storm to pass, its about learning to dance in the rain"

26. When someone is diagnosed I’d like to tell them...

There is so much support out there. Don't let shitty Doctors get to you. You will make amazing friends and they will help you get through this

27. Something that has surprised me about living with an illness is... 
How many amazing people are out their struggling with their crappy bodies. Also how crap some Drs can be.

28. The nicest thing someone did for me when I wasn’t feeling well was...
Sent me an amazing care package of beautiful things I love to cheer me up. Also someone stayed up really late to keep me company whilst I couldn't sleep due to pain.

29. I’m involved with Invisible Illness Week because...
There needs to be more awareness with making the invisible visible. If people actually opened their eyes and paid attention they would realise it's not so invisible.

30. The fact that you read this list makes me feel.. 

So happy and loved and I want to give you a big hug. Thank you <3

If you have any questions you can tweet me, email me at mermaidindisguise@outlook.com or leave a comment and I will get back to you. Im here for all of you if you are ever struggling and if you've just been diagnosed and are scared hit me up.

Beth...x

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