Skip to main content

Keep fighting: a change is going to come

So everything is about to change. That's what I have decided. I'm moments away from being diagnosed with either Ehlers Danlos Syndrome Type Hypermobility or Joint Hypermobility Syndrome and so it's time to make some changes and accept the fact that this is what I have to deal with for the rest of my life. 

I'm noticing so many more symptoms now. I don't think more are appearing, I think I'm just noticing them more now that I have more knowledge. My fingers and hands become sore faster when writing or even typing, my knees hurt and the biggest one, I can't eat one meal without feeling sick. I'm hoping its due to the wheat allergy/intolerance so when I stop eating wheat it'll go away. 

It's just over a week until my mums birthday and we are getting her a Thermomix! So after that it'll be bye bye wheat and hopefully some of my symptoms will go with it. I'm considering going back to my hand therapist to talk about my hand and finger pain because I don't think that my physio should have to deal with it and the hand therapist I saw when I broke my elbow is very knowledgable and it's her speciality after all. I just haven't gotten up the nerve to go back in. I don't know how to tell her. Although I think she'd be happy/relieved to know that I'm closer to a diagnosis. I want to go back to the orthopaedic surgeon that said that my elbow shouldn't still be hurting and tell him to suck it! I have a reason! Even my neurologist who I saw on Monday agrees that it's important to get a firm diagnosis. I'm scared soon I won't be able to type, walk, write or do anything without serious pain. I'm trying so hard not to hyperextended my joints but it's so difficult. It's just natural for me. It's what I know. 

A change is coming. I'm making a change. I won't be brought down by my syndromes. I'm going to get better. I can do this. 

BB :) 

Comments

Popular posts from this blog

Turquoise for Dysautonomia Awareness Month

Again it's been a month since I posted... Opps! It's been an intense month! My endoscopy went well. They were worried about an anaphylactic reaction to the Propofol but luckily that didn't happen. Sadly though they didn't find anything so still no answers but I've got my gastro appointment in about 3 weeks so hopefully we'll have a plan to move forward then. I also managed to have a POTS flare after the procedure due to the 'eating and drinking nothing for 18 hours' thing. But after fluids and the threat of an admission I went home to snuggle up with Ami. Next in September was an anaphylactic reaction to peanuts, uni problems and a possible CRPS diagnosis, amongst others. Let's just focus on the possible CRPS diagnosis. As you may or may not know, I fractured my right ankle in 2014, followed by 13 weeks in a boot and crutches + 4 months of rehab, plus rehab that continues to this day. My ankle has since never be the same, but usually it...

Absent

Sorry I've been so absent recently. I've had loads of exams this week and I've been quite stressed and not super healthy. I don't think my body has been coping very well with all the stress and I've had some GI flare ups and joint issues these past couple of days. On Saturday night I went to a party and I paid for my choices the next day as I couldn't walk without my crutches. I do through phases where I am almost jumping off the walls and feeling amazing and the next day I can't walk. Boom and Bust. I've never been very good at managing the boom and bust and stress cycle. I guess I haven't really mastered the art of pacing quite yet. I also did something quite stupid in my semi-drunken state on Saturday. I told some of my friends what I'd been going through. Usually I would never say anything and I wish that I could take it back, but I can't. I guess in that moment I just felt safe. Now don't get me wrong, I didn't tell them everythi...

The wrath of medication forgetfulness

I'm really feeling the effects of my stupid forgetful brain this morning. I didn't realise how much my medication helps (because sometimes it doesn't feel like it does anything) until I forgot to take it last night. I have to admit, it probably wouldn't have been a great combination with the alcohol that was probably still in my system when I went to bed, but still, I'm really feeling the effects this morning. The bad part, my rescue medication has some seriously horrible side effects so I probably won't be taking that any time soon. I guess I deserve the pain I'm in this morning, after all I did drink and then forget to take my medication before I went to bed last night, over estimating my pain management skills I think. Now even the sound of my computer keys tapping is sending my brain into sensory overload and I have no idea how I'm going to get all my assignments done today. I deserve this, but still I feel sorry for myself. The feeling of waking u...