Overdid it yesterday... I knew it was coming...

I knew it! I was just doing too much yesterday and I sure am paying for it today by feeling more dead than alive and looking it too! I was planning to go out with my parents in the late morning but had to cancel and stay in bed, fell asleep again until a friend called me at 12:40pm and woke me up! I dare say my jaw nearly fell to the floor when I looked at the time! Spent all day feeling physically drained, been laying on the sofa at parents place most of the day unless helping mum with her laptop or cooking dinner. Could have easily fallen asleep again in the early evening but somehow managed to stay awake. I knew this was coming. It's always like this... I do something fun one day, and feel more dead than alive the next :( Will try to rest as much as possible these coming few days, I have my aqua aerobics on Wednesday, a couple of meetings on Thursday out of which one is at 9am (I don't know where those people have their brain! Calling a chronically ill, insomniac to a meeting at bloody 9am!) and on Friday I'm going to see a hand specialist occupational therapist in the neighbor town to discuss my darn thumb and my wrists. My occupational therapist agreed a while ago that a ring splint for my left thumb MCP joint is probably the best, seeing a regular thumb brace prevents me from using my hand and my thumb is so bendy I can escape the brace, and the plastic bit and rough fabric in my current brace rubs my skin over the MCP joint, which causes discomfort so I don't wear the brace instead... On Saturday, if I'm still alive by then, mum and I might take the train (and I've said I'd never take the train again after an experience in September) to Gothenburg to go to some shops near the central station, but we'll see about that one, I might sleep the weekend away after the hectic WTF of this coming week. But if we do go to Gothenburg on Saturday, at least I will have my soft, hinged knee brace again by then, it's been at the hospital for adjustments to fit my left knee and make it easier to take on and off, since I got the rigid brace for my right knee. And of course, I'll have the darn crutches that loves to ruin my hands and arms... And if people don't mind their step and keep kicking on them in Gothenburg this time, I might just loose it and scream at someone to use their frikken eyes! My crutches are RED (the handles) and have bright neon yellow reflective stickers on them, it's impossible to NOT see them unless you're blind! Might look into getting a pair of smartcrutches soon, even though I'd have to import them from abroad, at least they're more gentle to hands and arms and even okay for EDS'ers to use, more about those can be found on http://www.smartcrutch.com/ Though that being said, it still won't help at all when both legs are on strike... It will just hopefully make me less achy when I walk, and hopefully won't get tired too fast either. Regular forearm crutches like I'm using now are HELL for my hands and wrists! On another note: I don't know how the TV stations around here can survive! There's absolutely NOTHING on TV on a Saturday evening! Time to hit the hay pretty soon... I'm sleepy!

First day as 27

The day started okay, I woke up when I planned to, snoozed for an hour and got up an hour later than I first had planned. Anyways, I did do what I planned to do, minus the nail polish, eyebrows and makeup (I just wasn't in the mood for it) and out I went for a visit at my favorite cafe. Mum had "ordered" me to listen to a local radio station between 1pm and 3pm because she had requested a song for me on there, the song wasn't played unfortunately so it feels like I wasted a couple of hours listening to shite music when I really just wanted peace and quiet. My grandmother arrived by train at 1:40pm and because of me being stuck with the radio, dad had to go pick her up at the station. I was the master chef of the day, cooking oven fried potatoes, pork outside fillet which is much nicer than the fillet, red wine gravy and asparagus for dinner, all on my own with no assistance in the kitchen at all. A friend came over while I was busy in the kitchen and we were chitchatting while I was cooking dinner and she got to try all the kinds of cakes and cookies I had baked earlier in the week and she then joined us for dinner. Dinner got top mark from everyone, my grandmother even said everything tasted better than at the restaurant we had lunch at when going to the book fair together the other week ;) Began preparing the birthday cake after dinner and while I was decorating the cake our family friends arrived just before 5pm. Had coffe, cakes, cookies and birthday cake at around 6pm and everyone said everything tasted amazing! Chitchatting and DVD watching on the sofa after coffee until it was time to drive my grandmother back to the station for her 8:17pm train, then back to parents place where dad and the family friends were still watching DVD's and we kept watching more DVD's and looking in photo albums and just talking. Our family friends stayed until 11pm and I got back home to my place shortly after 11:30 after a really nice but tiring and busy day! Think I'll rest up tomorrow. I'm getting a really sore throat now anyways, might be catching yet another cold. I'm absolutely shattered, but happy with the day!

A year older and my "new life"...

So I'm 27, or actually, I'm 27 in less than an hour as I was born at 2:40am on October 19th. Now you might wonder what I'm still doing awake at nearly 2am... Like I always say: I was born night owl! Just the time of day I was born says it all. So, am I going to celebrate today? No, not really. My grandmother is coming and a couple of family friends are coming, and we'll all be at my parents place sipping coffee and enjoying the home made (by me) cookies and cakes I've baked this week despite being severely out of energy. Will power made me manage to make cinnamon swirls and cookies on Monday, a butter cream filled chocolate roll cake and more cookies on Tuesday and the cake part of my birthday cake, a cake with gingerbread spices and oat cookies earlier tonight, for the most part by me, but with a little help from mum from time to time. When I wake up in the morning today I'll jump into the shower as soon as possible and fix my eyebrows a bit, they look like crap at the moment! Might put a layer of nail polish on my fingernails too. I might even bother about makeup today to at least try to hide how I feel on my own birthday and with having to be around people I don't see everyday. I've barely been outside in the past few weeks, unless being at my parents place or having my weekly aqua aerobics or some medical appointment, and I also join my parents with the grocery shopping. Other than that, I'm hardly seen outside. I had a cold a few weeks ago, and parts of it is apparently still lingering in me because it feels like I still haven't recovered from it. I'm constantly very fatigued and sleep more than usual which is typical me when my body is fighting something. Nose also feels swollen inside still so it happens I wake up unable to breathe through my nose in the morning. Might need a round of tablets for it, a medicine I've had once in the past when a cold lingered in my nose. The ENT I saw then had never seen a more swollen nose weeks after a cold and wondered how I could breathe through it at all. I also finally got my diagnose 3 weeks ago now, ending an over 1.5 year long "fight", I was right about my body, and my doctor finally saw it. I do have Ehlers Danlos Syndrome! It's bittersweet to finally have it written on paper now. Sweet because I was right and there's now guidelines to follow and it feels safe to know it's there in case something happens. Should I need a surgery of any kind, there are some things to keep in mind on an EDS patient, need to be careful with breathing tubes, moving the patient and local anesthetics and sedatives might not work and suturing needs to be done different. Without the diagnose the doctors would think I'm normal and do everything like normal which might result in complications that could be avoided. So it feels safe to have it written, and I did "celebrate" on my diagnosis day that the long struggle for a diagnose was over. At the same time, it's bitter: Fuck! I do indeed have a chronic, progressive condition that will do its best to kick my ass unless I kick EDS's ass first! I need to reconsider things and EDS is putting a few obstacles on the road that is my life, for example, for the past 6 or so weeks, I've had what I call "walk account", and that's mainly used up by getting around indoors, for longer distances I am depending on crutches because of a very painful hip, using crutches sure does limit what you can do as it's bulky and you have to carry almost everything in a backpack as the hands are busy using the crutches. I am proactive with my condition though, I wear my custom fitted knee brace when walking, I attend the warm water aqua aerobics weekly to get some gentle exercise with supervision, I take my painkillers and muscle relaxant if I feel I really need to, if it means I can do something that the pain would stop me from doing. Like on Monday, it took a fair bit of painkillers and muscle relaxant to bake those cinnamon swirls and cookies, but I did it! Without taking the painkillers I wouldn't have managed it at all. I do keep painkillers at a minimum when I can, but sometimes I have to pick between painkillers and feeling more alive for a few hours, or no painkillers and just resting in bed or on a sofa. I'm currently in a painy period too. I'm considering discussing with my GP about going back onto patches to have a basal coverage around the clock, and thus needing less of my instant release medicine. I was on the patch last year and it worked amazingly well with no side effects. I think I need something working in the background now and I prefer a patch rather than having to take pills every 8-12 hours. I won't touch things like Amitriptyline or Pregabalin etc, it has more side effects than actual effects! My GP is also referring me for a rehabilitation stay at the bigger hospital nearby, a 2-3 week admission where I'll have more aqua aerobics, get to talk more with occupational therapists and physiotherapists to hopefully feel better physically and learn how to better deal with my condition physically by doing things in a better way. I am also discussing with my OT about getting a wheelchair. Not to become wheelchair BOUND, but to get part of my life back with again being able to be spontaneous with say a day out at the mall with family or friends or being able to attend something that would normally mean being on my legs all day or the possibility of uncomfortable seating. If I had been having a wheelchair in May, the Mother's day lunch with my parents and grandmother would have been much more pleasant for me just to mention something. The chairs in the restaurant we went to were absolutely awful, I was in agony the whole time! Going back to the very same restaurant in November to celebrate Father's day and I'm dreading it already, knowing how uncomfortable I sit there. We don't want to go anywhere else though, the restaurant is very cozy and has excellent staff and food. But the chairs, OMG! Mum and I went on a bus trip in September, to a huge shop, and I really looked forward to going, but at the same time I was absolutely terrified my legs wouldn't cope with the amount of walking, later in September I went to a book fair in Gothenburg and had people kicking on my crutches all the time in the convention center, along with having to stand in line to even get inside the place, and on my way home on the train, I ended up sitting in a hard staircase on the train because no one cared that a disabled person boarded the train! During all those times, a wheelchair would have spared me from a lot of pain and stress! And with a wheelchair I wouldn't need to rest for several days before going out for something fun. Anyways, enough rambling already! I'm NOT going to let this shitty fucking condition ruin my life! I take it for what it is and fight in the ways I can! It's 2:42am, I'm 27 years old plus a couple of minutes. Now I'd better catch some sleep so I don't look like a panda when the guests arrive in the afternoon!

An update

This so called summer is coming to an end and autumn is knocking on the windows and door. I say "so called summer" because this summer has been absolutely miserable weather wise! Rain, wind, wind and rain, and temperatures below average with only very very few "warm" days (25C or warmer). Even the national weather service has admitted this summer has been miserable now, that's something most of us normal people figured out already in June when we got 2.5 months worth of rain in a couple of weeks time, out of which most of it was during one week! Swimming outdoors wasn't really possible until less than two weeks ago. We had a real warm week in late May, but at that time the lakes were still too cold due to it having been cold until then. Mum and I got our swimwear wet in a lake for the first time this summer, on August 12th and then again on the 15th and then what was probably the last time this summer, on the 21st. Yesterday the lovely (NOT) rain was back again, and today has been showers. So, summer is coming to an end and I'm still pale as a ghost on the border of being transparent and relying on Garnier BB cream and Bare Minerals powder foundation to have some color in my face. On the health front. I've lost a fair bit of weight lately, and since May, I've finally had and still have, a working painkiller which sadly is no less than rapid acting Oxycodone (OxyNorm). I don't take it often, only when I simply can't cope with the pain, like getting tears in my eyes from pain or it's keeping me from sleep, or when I have a busy day and not having time to rest as much as my body tells me to do. Anyways, when I do take Oxy, I become human again! I don't get any side effects from it, I only get pain relief, and with less pain I'm able to focus on what I need to focus on and I get more energy to do what I need to or want to do. I've taken Oxy to take long walks, I've taken it to attend a family gathering just the other week (to not be in agony when standing and sitting a lot in the afternoon and evening), and of course, I've taken it for breakthrough pain I wouldn't even wish upon my worst enemy if I had one. I saw my doctor yesterday and thankfully he renewed my Oxy prescription without arguments as he could clearly see that I had not been taken many of them (23 out of 28 since May), and he also got a personal letter from me to read as soon as possible. I also got a muscle relaxant medicine (Chlorzoxazone) I asked to try after being recommended to ask for it by a nurse who deals with a lot of EDS patients as her husband is the best EDS doctor in the entire country. At the moment I'm fighting severe neck pain which is so bad I simply have to spend a lot of time in bed to not feel nauseous from pain, and to keep the headache caused by the neck in check. The headache also gives me some nausea. I dare say it's a relief to have the Oxy AND the muscle relaxant at the moment, as I've been using both to get through the day today. As far as I can tell, the muscle relaxant is helping for me. I have no side effects whatsoever from OxyNorm or the muscle relaxant which I'm very relieved about! I can drive on Oxy without problem as the only thing it does is relieving the pain, it doesn't affect my reaction or awareness at all. I have more side effects from Tramadol or Codeine (tendency to get drowsy, and it can make my stomach slow along with making me feel a bit clammy) and it does nothing for the pain. So Oxy it is, relief and no side effects at all. Mood wise I'm feeling great :) Not letting physical aches, pains and disability stop me from living my life to the fullest within the limits I have! I really should try to get some sleep now. I have a busy day ahead ;)

It's been a while again...

It's been a few months since my last post here. I really do need to get better at this blog thing! Anyways. A fair bit has happened since my last post. I've moved back to Sweden again, to my hometown. I have my own cozy 1 room apartment a couple of buildings away from where my parents live and I'm feeling very much at home here. Healthcare has been a minor disaster since I came back to Sweden though. I was on Fentanyl patches for pain management when I moved from Denmark, but the doctors here denied to prescribe it to me without seeing my medical files due to it being such a strong medicine which has gotten some negative attention in the news in Sweden lately because there are some blasted idiots out there who abuse the patches and smoke them- it has resulted in a couple of deaths. Needless to say, that causes a lot of issues for those of us out there who actually NEED the patches for dealing with chronic pain. Out of the things I have tried for my pain, the patches has been working the best and given me the least side effects. They are highly addictive but I am immune to it. When I feel I can do without painkillers, I just take the patch off and don't put a new one on, I get no withdrawal symptoms whatsoever. Apart from the lack of proper pain relief, my medical files from Denmark still hasn't arrived at my clinic here in Sweden. My clinic here ordered my files back in February and still nothing. I've given up now and told the doctors here that screw it, we're going back to square one now. Said and done, things are finally beginning to happen! Referral has been sent to Occupational therapist which I am seeing next week, on May 3rd and that will mean finally getting bracing and aid that I need to have available at home to be less limited in my daily life. Also going to see some orthopedic specialist to get knee braces, the OT wasn't sure such a referral had been sent for me so she was going to check with my doctor as the OT doesn't do knees. I will discuss a wheelchair with the OT. I have been considering it for a while because of how my legs and back behaves some days. I know some are totally supporting that decision and some are totally against it, but I am not anyone else than me, and I do firmly believe having one around would be useful some days. I don't cope with pain as well as some I know do, and I'm not afraid of accepting the help I can get. It's not a "I give up" but a "I refuse to let bad days have me stranded at home". I shall not let my body limit me! Other than that, referral for EDS testing is or has been sent as well. Danish doctors said I don't have EDS, but most people I have talked with on Facebook in various EDS groups, agrees that I'm a school book example of EDS and if I am indeed diagnosed here in Sweden, some doctors in Denmark will be reported for malpractice! To be quite honest. I should be asleep now. But I just can't sleep! Too much going on in my head. I did try to fall asleep for a while but ended up getting back onto computer to write this post... I'm having a heavy heart tonight... Spent the past few hours crying a fair bit and thinking about life in general... Came to the conclusion that I have no intention to reach an old age, or well, I came to that conclusion a long time ago really... But tonight I've been thinking more about it. I will choose to end it one day, when my quality of life is too low and/or I can no longer take care of myself. I'd rather be dead that live in a nursing home and depend on others! I want to live, not just exist. Umm, ok now the whole internet knows about that. But at least I got my head cleared a bit! Maybe I can get some sleep now?

One week left!

A lot has been happening since my last post. Think I mentioned last time how it had been decided I'd move back to my hometown soon. Well, that soon came very soon! I signed contract for a one room apartment in my hometown earlier in January while I was still up at my parents place, and I'm leaving Copenhagen next Saturday! The weather seems to be fine next weekend and there's available trailers so my parents are coming down to Copenhagen to help me move out of my current apartment and transport me and all the things the 250miles (400km) to my hometown. I'm feeling a bit stressed at the moment because there's so much to remember and do before moving, especially since I'm moving so far and to another country. I'll move to my home country, but still another country from where I'm living now so there's some extra paperwork involved compared to moving within a country. Considering I have some health issues, there's also a lot to deal with medical wise, needing to make sure my medical records are sent over to the doctors in Sweden and such. It will be kinda sad leaving my current doctor because she's really good, one of those rare doctors who really listens to patients and don't assume chronic pain patients wants painkillers for the rush. Many Swedish doctors are complete assholes as far as pain relief goes. Chronic pain patients are assumed to be drug addicts and doctors keep lecturing about the dangers of using opiates. Well, I'm sure everyone living with pain who has been or is using opiates are well aware of the risks it involves and no one chooses to need that kind of medicine! Personally, I don't like to take painkillers, but sometimes my brain just kinda short circuits from the pain and then I have no choice but resorting to painkillers for a while until I can handle it again. I have been on Fentanyl patches, Fentanyl is probably one of the most addictive painkillers out there and it should be respected and used carefully. I was on the patches for about 1.5 month and then I quit, just quit! No withdrawal symptoms or anything, so if a doctor begins to lecture me about opiate use, they can just take that lecture and shove it up their butt! I do not get addicted to any medicine and never have! BUT I'm hoping to not need to go back to strong opiates, I even feel it's bad enough taking Tramadol every once in a while. But yeah, sometimes I have to, to function. The Swedish doctors view on painkillers does make me a bit nervous though. Will I be able to get the right help if hitting the high numbers on the pain scale? On the other hand, the only thing I have in Denmark now is my doctor and she can't help me with anything else than pain relief when needed since the doctors she's sent me to has refused to give a proper diagnose. The chances of getting a proper diagnose might be better in Sweden... I have a name of a doctor in Sweden I'll ask for a referral to. So as you can see, it's a bit complicated. But I'm sure everything will be fine once I'm back in Sweden and everything. Right now my brain is just doing the spin cycles like a washing machine with everything I need to remember and do before moving. That, plus adding as much workout as I can handle each day AND packing and preparing at home. The other day I walked at least 6.5 miles, that's over 10km. I like to do such things, even though it really takes a toll on my body! I might be pushing myself a bit too much these days, but will have one thing less to do once I've moved and unpacked my belongings in the new apartment. After that I can focus on loosing weight and working out even more than I do now! And I won't need to save my energy for other things, I can use it all up on working out! I have a fair bit of weight to loose still and I am going to succeed! NOT going to let my crappy joints stop me from reaching that goal!

It's been a while again.

I haven't blogged anything lately. Guess I've just been too busy or not in the mood or not known what to write. Thing is, I don't really know what to write today either, I just thought I'd give you all a brief update on things. Or well... A lot has changed lately! I won't be studying in Lund and I will be moving back to my hometown as soon as I possibly can- I'm currently in Q for an apartment there. My health situation is scaring people who care about me. I can't be this far away from family all by myself. In the past few weeks I have had dizzy episodes with loss of vision and hearing and numbness of arms and legs, it's by pure will power I managed to not pass out! My doctor and I are currently trying to find out what's causing me to nearly pass out. It has been happening from time to time since my teens, but it's gotten worse now. I will wear a heart monitor for three days in beginning of December, maybe that will give some more answers, a regular EKG didn't say much last week. Joints are still as loose and floppy, my net sister even suggested I look into getting a wheelchair before I have to have one. Not too sure what to think about it really. I prefer to not even wear braces on my joints and I am constantly fighting the will to just rip the Fentanyl patch off and not put another one on because I hate them for what they are! The patches helps, but I simply just HATE being on those damn narcotics! I've been on the patches for little more than a month now. It makes me feel better, but I'm still hoping to just learn to live with the pain because I do not want to be on painkillers! Oh, and study wise, Gothenburg University will have to do as it is within commuting distance from my hometown (about 40 minutes by train from hometown to Gothenburg). I'm not too happy about that, but it's a good school too so I'll have to live with it...