Well, today was a pretty good (although very tiring) day =D. I relaxed for most of the morning, because I knew that I had a hair appointment in the afternoon (yes! I got my hair done for the first time in years!!!) I took some before and after shots of what my hair looks like. Please excuse my very very tired face! lol
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| Before... |
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| After 1 |
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| After 2 |
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| After 3 |
I got three different colours of foils in my hair (purple, red and gold), and I had it cut a bit shorter than it was, and more layered. I was really impressed with the price, and how nice the girls who did my hair were! They even understood ME/CFS, and were sympathetic! =D It was really hard for me to sit up for all that time though - it took a couple of hours by the time they cut, straightened, dyed, dried, etc. But I loved it! I came home and slept afterwards.
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| My New Mouse Pad! |
Anyways, tomorrow we are having visitors come to stay with us. I hope I have some energy to enjoy their visit. I get embarrassed when I'm too tired to chat or act social. In other news, my real-life prizes from Puzzle Pirates (for the portrait background contest that I won) came in the mail today! I was so excited! I love the way their envelopes have a little piratey OOO sticker on them! My prize was a mouse pad (pictured to the left) and a packet of Puzzle Pirates playing cards! Since I already have a packet of playing cards, I gave them to my sister, Ellenya. They are really cute, with little familiars in the aces, and Ocean Masters as the kings and queens!
~Adrielle =)
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 =)
Well, for the last six weeks, I have been having iron injections - one every Tuesday. My iron was very low, and iron in tablet form makes me really sick, so I can't take them. Yesterdays iron needle didn't hurt too much, but every week my bruise gets bigger, more spread out, and more multi-coloured... lol! It is about the size of my hand at the moment, which is kinda nasty. It seems to be taking forever to fade as well.
Anyway, the needles are making me feel a little better in myself - concentration and energy-wise (although I still don't have the energy to do very much at all). Couple that with the effects of the prednisone on reducing my pain and swelling, and the last two weeks I have become a new woman! I am dreading the gradual reduction in dosage from this week on. I don't want to end up back the way I was where I couldn't type, couldn't walk even around the house, couldn't raise my arms above my head, etc. Hopefully the two weeks at this dose will have knocked the swelling on the head enough that it won't return too quickly.
As to the cause of my swelling and pain, it is still sort of unknown. Although I have Ehlers-Danlos SyndromeME/CFS (which cause seriously nasty joint, muscle and nerve pain in themselves!), my doctor suspects that this new type of pain I am feeling (for about a year now, gradually worsening) is caused by a separate an unknown rheumatological condition (she even mentioned some kind of widespread viral arthritis at one stage). It affects pretty much every joint in my entire body, and my blood test markers have been showing a marked gradual increase in inflammation (and necrosis?!) over a period of months. All I know is - I am REALLY glad I tried the prednisone tablets, because the amount of relief they have given me has given me hope that I won't be so decrepit forever! lol
~Adrielle =)
Well, today was the most full on day that I have had in ages. I got up, got dressed and painted my nails, and then went on a 45 minute car trip to an orchid show. I went to take some photos to hopefully enter into an upcoming orchid photography competition. When I planned to go to the show, I thought that it would be a morning out; difficult, but doable in my current state of health. Unfortunately, by the time we looked at the show, had lunch, then went to visit relatives, it turned out that we didn't get home until after 5pm.
It was very hard. I needed help to walk up the five steps at my house because I couldn't do it alone. My muscles were refusing to hold me up, I had horrible nausea and a headache, my mind wouldn't think and I was in so much pain I didn't know how I was going to get inside! After a few hours of sleep, I did feel slightly better (although I kept waking up with a start because all my joints were so unstable and kept trying to dislocate on me!)
I eventually got up and logged on to my laptop to try to look at the photos I had taken, but I couldn't really focus enough to check whether they are actually in focus! I will have to look again tomorrow. Hopefully I got at least a few nice ones! I was leaning the camera on the arm of my wheelchair to try to combat my shaky handedness, so fingers crossed they won't be too blurry.
Anyways, I made the mistake of reading my emails. There was one from someone on a forum that I mentioned my magazine idea on, saying that I shouldn't have done so without permission from the site owner (the rules of the site say that you need permission for commercial advertisements - but the magazine idea is not a commercial advertisement, its a not-for-profit project between anyone who wants to get involved, so I didn't know it wasn't allowed). In my sick and depressed state, it was a real kick in the guts. I guess it feels like those who try to do positive stuff and get some community involvement going are not allowed to.
I know I am taking a big risk trying to get this project up and running, and most of the feedback I have been getting has been really positive and encouraging. I'm just not brilliant at coping with criticism in my current mood, especially when I don't really understand why I am in trouble. I guess it will make sense in the morning when I'm not quite as tired! lol
Hopefully, things will be clearer in the morning!
~Adrielle =)
So, I went to the doctor today. I hate going there; firstly, because it is physically and emotionally tiring, and secondly because I am always nervous when I go. I have this feeling that I am kind of wasting the doctor's time, coz there are probably lots of sicker people that she could be spending her time on :S. Anyways, I had my fourth needle in the bum for iron deficiency while I was there (seriously, I am getting so sick of them! AND I HAVE SIX MORE TO GO!) They are helping a little, though. I feel a little less foggy-brained, and more awake.
I also discussed my pain issues with my doctor today. The tablets that she prescribed have been doing nothing for my pain, and it is getting so bad. Often, I can't type, can't walk (or I walk with a pretty obvious limp), and can't sleep because of it. It is the kind of pain where you can't think of much else, and you keep going "why is my arm killing me" and then remembering - o, it's that weird unexplained pain again :P. I mean, I have always had pretty severe chronic pain with my ME/CFS, but this is just different. Worse, and more long-lasting and widespread. I'm limping badly all the time now instead of just on bad days.
I was nervous that my doctor wouldn't understand, or would think I was just being silly - but she was really very understanding. She wrote a prescription for prednisolone, which is a corticosteroid that I used to take for severe asthma when I was a kid. She thinks might help the pain and inflammation. I hope it does; this pain is just so frustrating! I just feel like crying like a baby all the time because of it! Apparently, if this tablet doesn't work, it rules out a whole heap of inflammatory conditions. Ruling stuff out is nice, but I would rather have a solid answer - "You have this. This will cure it". Unfortunately, things never seem to work like that :P.
I also asked my doctor about my hypermobility again, and she said that I probably have Ehlers-Danlos Syndrome, but that there is no blood test that will prove it. She said again that she is going to send me to a rhumatologist, but didn't write out a referral today. I know I am probably being impatient, but want to be better faster. I don't like delays; but I guess things need to be ruled out or in first.
Anyways, it is about my bed time, I think. Nighty night!
~Adrielle =)
So, I am tired, nauseous, in pain and can't sleep. I'm lying in bed in the dark googling stuff on my iPad. Bad idea. My pain, and my finger clicking out today made me google "dislocations" and "joint hyper mobility syndrome" (which my doctor says I have). Well, from my sleepy googlings, it seems JHS is generally most severe during childhood, and improves as you get older. Mine is exactly the opposite.
I was always a flexible kid, but I only started dislocating bones at the age of 11 years. By my mid teens, I had dislocated my knees dozens of times, and had begun to dislocate my shoulders. By the time I finished high school, my dislocations were happening roughly once a month, and my affected joints included toes, wrists, thumbs, shoulders, and knees. I am now 24, and I dislocate a bone each week, fingers, wrists, hands, knees, thumbs, shoulders, toes. Yes, I'm seeing a disturbing pattern... Couple that with my worsening joint and muscle pain (which I put down to ME/CFS/FM) and I am kinda scared of my future!
Anyway, recently I had an abnormal blood test that showed inflammation similar to what you would get with rheumatoid arthritis, but my doctor doesn't think I have that. A few times, my doctor has mentioned testing me for connective tissue disorders (like Ehlers-Danlos syndrome) but she never has quite gotten around to it :p. Using the magic of google, it seems that I do have a lot of symptoms characteristic of EDS. Reading through peoples' descriptions of it, I was like OMGosh! That's me!
-loose, unstable hypermobile joints with many dislocations (mmhmm)
-rolling/spraining ankles frequently (yup - especially when I used to do acrobatics)
-bruising easily (always assumed it was ME/CFS related, but I've always bruised more easily than other ppl seem to. I think I get that from my mum)
-often not diagnosed till adulthood (I'm 24)
-muscle fatigue and pain (well some of that is probably just ME/CFS, but my pain is getting a lot worse lately, so I'm looking for reasons why)
-myalgia and arthralgia (ME/CFS symptoms, but mine have got progressively worse lately)
-short sightedness (gotta pick up my new contact lenses tomorrow lol)
-increased risk of pneumothorax (been there, survived that)
-weird sensation of joints "pulling" by themselves (especially in my shoulders, I assumed it was ME/CFS related)
-heart palpitations and other heart problems (I get em from ME/CFS, so I guess I wouldn't know)
I have an appointment with my doctor tomorrow (for my weekly iron injection... Fun fun) so I really want to remember to mention this to her (although I am probably just clutching at straws trying to find a reason for why I keep dislocating, lol). I am also going to tell her that the pain medication she gave me isn't doing anything. (I mean, I had to swordfight on Puzzle Pirates using my knuckles on the space bar because my fingers were too sore to straighten :p that is SO not on! Lol! I'd also like to be able to walk around the house without the majorly hunched over limp, and without holding onto walls and furniture...) Anyway, I guess I should try to get some sleep again. Nighty night!
~Adrielle :D
Well, today was a stressful, tiring and long day for me! I had to go to the doctor in the morning, and I was nervous about going. The purpose of the visit was to get the results of all the blood tests that I had a week and a bit ago. It turns out that some of them showed abnormalities. My cholesterol still isn't good (although the good cholesterol to bad cholesterol ratio has gotten a lot better!). I had a slightly abnormal liver test (but all the other liver results were good), and tests showing inflammation or infection somewhere in my body came back higher than last time too (the result has been steadily rising since 2007, which to me is worrying. My doctor says she can't find where the inflammation or infection is, and if she didn't know better she would think I had arthritis or something... I want to know!). Anyway, another test that came back bad was my iron count. It has always been lowish, but it was worse than usual - so now I have to have needles in the bum every week. Yeah, my life rocks :p. Apparently, the needles cause permanent staining, as well... Nice. I hope I get a bit more energy from them though. Just having ME/CFS has to be better than having ME/CFS + anaemia!
I'm being referred to a specialist in Melbourne about my ME/CFS. I don't really know if/how they will help, but at least I feel like I am trying to find a solution to this illness! Lol. I hope they might be able to find out what is causing the inflammation/infection blood test results too :) and I hope they are nice. I hate telling all my history to new ppl :s. Melbourne is a pretty long way away from where I live, which is good in one way because going to see a specialist there means staying there for a few days. I am hoping to go to the aquarium while we are there! :D And I'd love to meet my cousin's baby! Truthfully, though, I generally spend my time away sleeping and suffering horrible symptoms because actually traveling takes so much out of me!
Anyway, after the doctor, we went shopping. I was way tired and sore, but it was so good to be out of the house. I got some new beads and a beading loom. I was annoyed that the craft shop didn't have the colour of cross stitch thread I needed to finish my sewing :(. I will have to try somewhere else. I also bought another visual diary/blank sketchbooky jounally thing. I have filled so many of them! Lol - I just like decorating and writing and drawing and pasting things in... This one has a pretty pink cover :D.
In other news, I lost one of my silver sharks yesterday :(. My Artemis axolotl is also still sick. She is refusing to eat anything, and it has been almost a week and a half. She is so skinny and weak. I love her so much, and it is breaking my heart to see her like this! We got some chicken livers today. I had hoped it might tempt her, but she just looked at it, and walked away (pushing past it). There are some live black worm larvae on the floor of her tank, just in case she feels hungry when I'm not around. I don't know whether she has eaten any of them or not, but at least I feel like if she gets hungry, she has something to eat (and being alive, they stay fresh). Almond very much enjoyed the liver, lol!
Well, Safari isn't letting me scroll up or down to proof-read any of what I am writing, so I hope this post isn't too incoherent! Lol!
~Adrielle =D
