30 things

30 Things You May Not Know

1. The illnesses I live with are:

 Fibromyalgia, Joint Hypermobility, Asthma, Depression & Anxiety

2. I was diagnosed with it in the year:

 Fibromyalgia 2008

3. But I had symptoms since:

Some since birth, some since my teens.

4. The biggest adjustment I’ve had to make is:

Having to rely on other people, & government systems that are as unreliable as myself.

5. Most people assume:

That I am too young to be disabled.

6. The hardest part about mornings are:

 Having to get up because I am in too much pain to lie there, when I am very fatigued. 

7. My favourite medical TV show is:

Helicopter Heroes count, I like the real ones!

8. A gadget I couldn’t live without is:

My laptop. Social life & Uni work would be none existent without it!

9. The hardest part about nights are:

Getting to sleep or going out cold before I can take my meds, or brush my teeth.
10. What do you take?

 17 tablets a day, 2 inhalers.

11. Regarding alternative treatments: It is called alternative for a reason, it is an alternative to rigorously tested, safe, reliable treatments...

12. If I had to choose between an invisible illness or visible I would choose: I live with both, invisible means that people treat you as though you can do anything, and visible, they treat you like you can't!

13. Regarding working and career: I have neither, but I use what skills & energy I have to help others I am working on getting a degree in physics, so I can play with particle accelerators!

14. People would be surprised to know: How much pain, physically & emotionally I am in everyday.

15. The hardest thing to accept about my new reality has been:

Realising my limitations, I am still new to a lot of this, I am still young & want to do things, a lot of them I just can't.

16. Something I never thought I could do with my illness that I did was: Have a social life: I love my sceptic meets & geek nights & improv.

17. The commercials about my illness:

In the UK there are none. But I am glad that no one is trying to sell me anything for it. I trust my doctors.

18. Something I really miss doing since I was diagnosed is:

Seeing my family & youth work.

19. It was really hard to have to give up:

regular sex, beer & my savings!

20. A new hobby I have taken up since my diagnosis is:

 I read so much more now!

21. If I could have one day of feeling normal again I would:

 I would get up early, go earn some money, go for a run or swim, rock Oli's world, have a beer & spend all night dancing! (as long as I didn't have to pay for some of it in the morning!)

22. My illness has taught me: 

To respect myself & other people.

23. Want to know a secret? One thing people say that gets under my skin is: You are too young to be disabled!

24. But I love it when people:

Come over to see me, take me out for lunch, don't need me to explain that I can't do certain things & make me laugh my socks off! (This is for my family, my best friends & kind random strangers)

25. My favourite motto, scripture, quote that gets me through tough times is: Carpe Diem! Corny but it gets me through.

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

Don't be afraid to ask for help, to tell people what you need & don't need, to have a bad day. The everyday stuff shouldn't be a chore

27. Something that has surprised me about living with an illness is:

 That actions speak louder than words. (*Is cleaning/cooking for you* is better than "I am always there for you")

28. The nicest thing someone did for me when I wasn’t feeling well was:

Oli has done so many things, I always consider them the nicest, because he works the hardest.

29. I’m involved with Invisible Illness Week because:

I was visibly vocal about being disabled!

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

That you may have a longer concentration span than me! I hope you enjoyed it, your prize is a sweet....knowledge that you know more about what I, & other disabled people go through daily!

Hi It's been hard having to adjust to life with Fibro, the worst thing is the feeling of frustration when the fibro limits your life.

There's nearly always a definite beginning for fms, people have had colds to near fatal accidents.
I have previously posted my story but I am goin g to touch on depression and how I am turning my promblems around (I still have them, I am providing no miracle cure!)
When I first did my back in I was suffering with depression, you'd have to be a Vulcan not to feel low if you went through the same. I started on this course: http://www.beatingtheblues.co.uk/btbOnline/introVideo.jsp was referred by my GP and since being diagnosed I started again when I got to Manchester. The first time was great, it helped me out of my depression and helped mine and Oli's relationship. The second time is a lot harder. A lot of the activities aren't relevent to what fms sufferers go through, making an activity sheet was EASY! Sticking to it, even harder, not because I am lazy but because it's not up to myself when I can do activities like seeing friends but when the Fibro says so. I can't make all my appointments so what I learn just goes out the window.

At the moment it feels like the Fibro has me I don't have IT!
This leads to me feeling low, at times suicidal and most of the time pretty useless. There are lots of things that I can do, I beleive it, it's not an empty statement. I can't help feel that I believe both, displacing one with the other isn't going to work as I have evidence for the both of them. Renaming it: "just a flare" or saying "it'll pass" is just denying what it really is a DISABILITY.
Although a flare temporary thing, Fibromyalgia isn't, it's hard work and in cognative behaviour therpay talk it's: Permanent, Internal and General.
It's permanent because there is no cure. It's internal because it's my body effecting my emotions, and general because it effects my life everyday in everyway.




I hate to compromise with Fibro, I fight it, trying to be normal. But how can you with limited spoons?



They call it a disability for a reason.

Compromising your life with an illness is what a lot of ppl deal with everyday.
There are a lot of reasons why I love being disabled:

1. I am totally sexeh! I have put on a bit of weight and some of it has gone to my BOOBIES, I am happier with myself now my curves are guilt free!
2. I try to make the most of my time, doing something educational or creative.
3. I value my health, I don't drink heavily and I know how to listen to my body
4.I value my relationships, my friends and family know that their fibropie tires easily and all our time is QUALITY. Me and Oli plan ahead but there's no pressure if things dont go our way.
5. Strangers are a lot nicer to me! Letting me cross the road, talking to me, giving up seats. whichleads nicely onto...
6. I have more confidence, I can talk to anyone and I am approachable now with my lil Letty (my stick, she lettys me go places I couldnt without her.

So my points are: I AM DISABLED but am FREAKIN' AWESOME!