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!