So, I decided to do the Invisible Illness Awareness Week blog!
1. The illnesses I live with are: ME/CFS, Ehlers-Danlos Syndrome, depression, and a suspected unknown rheumatoid condition. (The main/most debilitating one is ME/CFS).
2. I was diagnosed with ME/CFS in the year: 2004, when I was 18 years old and in my last year of high school. A few months later in that same year, I was also diagnosed with depression - this pretty much came about due to of all the changes that I had been forced to make to my life, because I now had ME/CFS (as well as the depressing symptoms and nature of the illness itself!)
I have also recently been diagnosed with Ehlers-Danlos Syndrome (only in the last month), and I am waiting for a diagnosis to explain why my joints have decided to swell as well as hurt all over, and affect the inflammation markers in my blood (my doctor suspects a rheumatological condition of some sort). I am seeing a specialist in November.
3. But I had symptoms since: I first got sick with the symptoms that would eventually be diagnosed as ME/CFS in early 2004. The symptoms came on suddenly, and I thought I was getting a flu or an infection of some sort. I was lucky in that my doctor had been seeing me for years, and knew that something was wrong. It took many months, and many second and third opinions before I ended up with a conclusive diagnosis. However, I know how lucky I am to have been diagnosed so quickly - I've heard that in many cases, it can take years to get answers.
As for the Ehlers-Danlos Syndrome, I have always been super flexible, and prone to injury. I first started spontaneously dislocating joints when I was 11 years old, when I dislocated and broke my kneecap (by just sitting down on a trampoline :S). Since then, my dislocations have become more and more frequent, and now occur in most of the joints of my body. I even dislocate bones in my sleep, which is scary! I was diagnosed with "flat feet" and scoliosis of the spine in high school, and had a collapsed lung in 2001 (I have read that these can be more common in people with EDS, but I am new to this diagnosis - I could be jumping to conclusions!)
4. The biggest adjustment I’ve had to make is: Changing my entire lifestyle! I used to be a very active person. I trained in acrobatics and circus skills every day after school, kept up with my studies, did singing, palates, yoga, dancing, drama, talent quests, shopping, and made art and craft in my spare time. After getting sick, I was finding it almost impossible to do any training at all. I was missing so much, and no one seemed to understand (it was hard for me to understand what was happening to me, as well). I felt lazy, because I was used to doing so much, and suddenly all I could do was sleep and zombie around the place. I have to say, though, that it has become a lot easier to deal with the limitations of ME/CFS with time. I have found new (sitting-in-a-chair-type) hobbies to replace my old active ones! I still very much miss my old life, but I have adjusted to my new life, and it has a lot of awesomeness too.
5. Most people assume: I don't know - never really thought about that! I guess I sort of feel like most people whom I talk to in real-life think that I am a bit slow; most of the time I am too exhausted to participate in conversation much, and then afterwards I get embarrassed and hope that people haven't thought that I am rude or something! Literally thinking of, and forming words can be difficult for me many days, especially if I have used energy to get showered, dressed, sit through a car trip, and go out into the world (even if I am being pushed in my wheelchair!) Chatting online has the advantage of me being able to take my time and re-read what I write before posting it =D.
6. The hardest part about mornings are: Getting out of bed and walking down the hallway! My legs (and the rest of my body) seize up and hurt like crazy, and I wake up just as tired as I was when I went to bed. I also get dizzy when I first wake up, so I have to take it slow.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is:
Only one?! Well, I like being long and drawn out, so I'm gonna list a few. I couldn't live without:
* My iPad, because it lets me chat and tweet and Facebook to my friends from bed when I am too sick to get up or to type. It has a pink cover and lots of game apps on it too!
* My laptop, because I can sit in my comfy and supportive armchair and chat, draw, play and connect with people.
* My battery operated toothbrush, my wheelchair, my massive queen-size bed with all its extra pillows to support my joints, and my shower chair.
9. The hardest part about nights are: Getting comfortable enough to get to sleep, and not being able to sleep, even though I am SO INCREDIBLY EXHAUSTED!
10. Each day I take around 12 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Have tried so many! They have mostly been terribly expensive, and none have actually worked (in some cases, they significantly worsened my quality of life).
12. If I had to choose between an invisible illness or visible I would choose: That is a hard one. Can I choose no illness at all? lol! I would like to increase awareness of invisible illness to make it easier for myself and other sufferers, either way.
13. Regarding working and career: I have never been able to work since high school (other than as a volunteer for short stints). I have a Bachelor of Behavioural Science degree from university, but unfortunately I am too ill to actually use the qualification! At the moment, I am a volunteer online for various websites, and I also make art and craft. I am studying 3D art and animation for film, games and television via e-learn (online), but I am working through the coursework verrrrrrrrrrrrrrrrrrry slowly! I find it incredibly hard to concentrate most of the time. I would love to be able to work, but at the moment, I am unable to.
14. People would be surprised to know: Hmm... I don't know! I think I talk too much, and have run out of surprises... Ok, I fantasise about having a mobility scooter - you know, the ride on and drive around anywhere kind? I would LOVE one of those so that I could go around my street on good days, or go to the park, or go buy lunch on my own. That would be awesome =D. And I would so decorate it with glitteriness!
15. The hardest thing to accept about my new reality has been: The unpredictable nature of this illness from day to day/month to month/year to year. It is SO difficult to make plans. Also, it is really hard to pace myself and to try to remain as well as I can without overdoing it (or underdoing it) - it is hard to strike a balance of doing as much as I can/should do, and much as I want to do. Overdoing it, even by a small amount, means a lengthy and nasty recovery period, which is frustrating! Coming to terms with the total change of lifestyle that ME/CFS caused was also obviously incredibly difficult.
16. Something I never thought I could do with my illness that I did was: End up being so open about it (and about other things). I was a very quiet person before I got sick, but now I find I can just talk to people. I also am really proud of getting my high school certificate and my university degree while ill, because I know how hard it was for me with my illness =).
17. The commercials about my illness: Don't seem to exist in my country. They so should, though. Wonder who I could talk to about that...
18. Something I really miss doing since I was diagnosed is: Acrobatics, walking around shops browsing, having the focus to write poetry and essays, being able to paint and draw in real-life (I mainly draw with a computer mouse now because my hands don't like co-operating!) and having the energy to look and feel alive!
19. It was really hard to have to give up: Acrobatics. I tried so hard to keep going! I would do like an hour of training instead of two and a half, but then I would go home and vomit all night because I had overdone it. I would take the next day or two to recover, but then I would try again. I must have been crazy!
20. A new hobby I have taken up since my diagnosis is: Online gaming, social networking, photography, digital art design, and beading.
21. If I could have one day of feeling normal again I would: go to a special place in the bush I used to be able to walk to, and sit there and listen to all the sounds that I used to love. I'd also take photos of it all so I couldn't forget. (Gosh! That question got me emotional!) O - and I would so go to the snow with Ellenya! And the beach, and the aquarium!
22. My illness has taught me: to be more understanding of other people, to count how many steps there are to get into places, to pace my activity (even tiny tasks), and to plan my days out based on energy.
23. Want to know a secret? One thing people say that gets under my skin is: Have you tried drinking coffee? Homeopathy/naturopathy? Why don't you just have a sleep, then go out? You can't just sit there in real life; you're lazy. You should help your mother more. When I was your age... Argh! Do you think I haven't tried? Or I want to be like this?!
24. But I love it when people: Understand, or make an effort to understand. I love it when people show that they care, try to cheer me up, and make me feel worthwhile =).
25. My favorite motto, scripture, quote that gets me through tough times is: GLUG! - Because it reminds me of my awesome friends and merry gluggers!
26. When someone is diagnosed I’d like to tell them: You're not alone! Come and hang out on Twitter if you have the energy to Tweet - there are so many awesome guys and gals on there who truly understand, and who are so amazingly supportive. Also, don't pause your life while you hope to get better - make the most of what you have while you are ill, because there is always something you can do (even if it is something very small).
27. Something that has surprised me about living with an illness is: The inner strength that I have, and the resilience. I always thought I wouldn't cope with something like this, but when actually faced with it, you can't turn away.
28. The nicest thing someone did for me when I wasn’t feeling well was: There have been so many nice things! From making me cups of tea, talking to me and just being there, sending me internet and real-life hugs, sending me cat-llamas, and making me smile and feel less alone =).
29. I’m involved with Invisible Illness Week because: I know it is really important to spread the word about these hidden illnesses; to increase understanding and acceptance in the world!
30. The fact that you read this list makes me feel: Awesome! Because I feel like I have done my part to spread the word about my invisible illnesses, and I feel like people care =D
~Adrielle =)
