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 ;)