30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:                           Complex Regional Pain Syndrome (CRPS) 

2. I was diagnosed with it in the year:           November 2012

3. But I had symptoms since:                        October 2012

4. The biggest adjustment I’ve had to make is: Everything - I have had to change so many things,  sometimes I view it as a bad thing however, it has given me opportunities I never thought I would have.

5. Most people assume:            That I have broken my leg because it is currently in a plaster cast.

6. The hardest part about mornings are:  Getting dressed, seems to take forever because I have to make sure nothing knocks my foot.

7. My favorite medical TV show is: I like Holby City and Casualty but I always have to look away at the gruesome parts because I'm really squeamish, I just like the story line.

8. A gadget I couldn’t live without is.           My phone, I use it constantly to talk to friends and communicate with the world.                                                 

9. The hardest part about nights are:    When you have bad pain in the night that interrupts your sleep or your mind is too busy thinking about everything.                                          

10. Each day I take between 30-40 pills & vitamins. Mainly for pain relief.  (No comments, please). 

11. Regarding alternative treatments I: am suspicious of treatments that have no scientific proof, however I'm willing to try everything to help with this condition.                                    

12. If I had to choose between an invisible illness or visible I would choose:  I think I would prefer to have a visible illness because it makes it easier for other people to understand. Though I suppose people with visible illnesses might prefer for it to be invisible. 

13. Regarding working and career: I was working in central London at a 5* hotel however, I have had to put that on pause because currently I am not well enough to work in a kitchen. I still work part time just to get me out of the house.

14. People would be surprised to know: Since being diagnosed with CRPS, my foot has started to ulcerate for the last 14 months, which increased my pain and meant that I am unable to walk on my foot any more. I have had so many problems with the ulceration. 

15. The hardest thing to accept about my new reality has been: Not being able to work in the kitchens and live in London independently.

16. Something I never thought I could do with my illness that I did was: I never thought that I would be able to compete in sport again, but I have surprised myself and become in love with wheelchair racing and handcycling, whenever I train I always feel amazing, it has completely changed me.

17. The commercials about my illness:      There are none - most people have never even heard of it.

18. Something I really miss doing since I was diagnosed is: I really miss the stress and the pressure of working in a professional kitchen and also I miss doing karate, which I did for 8 years before getting diagnosed.

19. It was really hard to have to give up: My independence living in London and relying only upon myself to get things done.

20. A new hobby I have taken up since my diagnosis is:  Handcycling and wheelchair racing is my new passion. It makes me so happy and I'm outstanded by the amount of support I've recieved. It has really helped me with every aspect of my life plus, I met my boyfriend training so it holds a lot of happy memories for me. 

21. If I could have one day of feeling normal again I would: Do everything I possibly good, I have learnt that you shouldn't hold back on doing things because you just don't know what is just around the corner for you.

22. My illness has taught me:  Just because the past didn't turn out how you wanted it to, doesn't mean the future can be better than you ever imagined. 

23. Want to know a secret? One thing people say that gets under my skin is: When people say they understand. Most people have no idea! How did you break your leg? You look absolutely fine? You look tired, have you been out partying? You look miserable. The list goes on and on. 

24. But I love it when people: Can see that I am struggling and offer a hand, and then respect my answer. Treat me like every one else. Try to listen and understand.

25. My favorite motto, scripture, quote that gets me through tough times is:       There are many quotes that I admire but my current favourite: Just because the past didn't turn out how you wanted it to, doesn't mean the future can be better than you ever imagined. 

26. When someone is diagnosed I’d like to tell them:                                                That CRPS doesn't have to rule your life. There is still hope and you can still achieved. There are adjustments that might have to be made but if you give up, there is no hope. Winners never quit and quitters never win. 

27. Something that has surprised me about living with an invisible illness is:     It doesn't all have to be doom and gloom, there are always things you can do that will make you happy and content, you just have to go out and find them. Even if it is not what you expected. 

28. The nicest thing someone did for me when I wasn’t feeling well was: When my boyfriend can tell I'm in pain, even without me saying anything and he tries to comfort me and get anything I need for me. 

29. I’m involved with Invisible Illness Week because: I want to help raise awareness or invisible illnesses  and CRPS in particular because it can happen to anyone at any time.

30. The fact that you read this list makes me feel:    Overwhelmed with the amount of support that I have recieved from everyone. So, thank you!! Xx

Intro

Hi! My name is Hannah and this is my boyfriend Dan. I was diagnosed with CRPS (Complex Regional Pain Syndrome) almost 3 years ago to the day. It has changed my life beyond recognition. I was an active, motivated, determined person and I had my mind set on only one thing, being a successful chef. All was well for a while and I managed to carry on working and living in London until I started getting ulcers on my affected right foot. The ulcers have changed everything for me, I was no longer able to pretend that everything was alright. I had to stop working in the kitchens which destroyed me as it was my one massive passion. I hope one day I will graduate and be able to return but right now I realise this is not possible. 

I decided to start a blog to help other sufferers, particularly those who are a similar age to myself, my friends and family understand better what life is like when you have CRPS. I understand how isolating and lonely it can be to be diagnosed with CRPS, especially when you are young and all of your friends are busy running around doing things and you're not able to keep up. But people need to realise that it doesn't have to control your life and there is always something you can do and succeed at. You just have to find it. I found this quote and for me it is absolutely perfect: 'Just because the past didn't turn out how you wanted it to, doesn't mean your future can't be better than you ever imagined.' Since I've started wheelchair racing and hand-cycling and since meeting Dan, my outlook has changed a lot. I now feel so happy and content even though I would never have imagined I would be in the position I am now. I am so grateful for all the support I have received in the past few months and it really has changed everything for me. Before this I was really struggling, I felt as though I had let people down or not lived up to expectations, even ones I set for myself but now I feel as though I have a purpose again. Whenever we train, I feel so good afterwards, I feel proud of what I have achieved so far and have big goals for the future. I want to give hope to other sufferers, so people realise that even though they may be really struggling now, it doesn't always have to be like that. Don't let CRPS rule you and destroy your life, try and turn it around into something positive and you might just be surprised, I certainly was! 

Thank you for reading! More to follow soon! xx