Again this one has been a long time coming but to be honest I’ve been too ill to write this, i still probably am but I feel like I need to do this so here I am!
So lets start from where we left of…. I went to see the ortho consultant he was lovely and wanted me to have an MRI of my shoulder the following week and then return to him for the results the same day, but anyway that day me and mum headed off to Farnham estate in Cavan for a relaxing night away. If you haven’t been to this hotel you need to go its fab and so relaxing, the spa is to die for!! Both me and mum had facials which although on the pricey side they were amazing, my therapist was so nice that when I told her I was in pain she said that if it was too much for me to be lying the whole time she could stop and she would do something else instead and because she couldn’t massage my neck and shoulders she gave me a leg massage instead, so nice! Anyway on the second day we were relaxing by the pool when I said to mum wouldn’t it be lovely to be able to stay another night!!! Next minute mum pops off to the toilet and she’s gone so long I was beginning to think she’d a wee accident…..when she eventually arrived back she let me know that she had just booked us in for another night of bliss!!! It was so nice to be away from everything and to forget about everything for awhile.Here’s a picture we took and I’m not exaggerating when I say that this was about the 100th attempt at a selfie.
The following week I was off for my MRI on my shoulder and then back to the ortho. So the long and the short of it is I have a brachial plexus injury a.k.a an injury to the network of nerves that conducts signals from the spinal cord and also I have a Hill Sachs lesion which is a small fracture to the head of my humerus!!! All that from simply doing a little exercise…. the joys of EDS! Unfortunately my health took a rapid turn for the worse from then on…. I won’t bore you with all the details but let’s just say I was worse than I’ve ever been!! My vertigo was back, my vision was blurry, my balance was terrible, I was super sensitive to light, my nausea was worse than ever before and therefore I was struggling to eat anything and what I did eat was the plainest food ever and even then it was coming back up more often than not, I had my poor parents tortured at meal times when they were trying there best to make me food that I’d like, but it was mountains of mashed potato and portions of plain pasta, I swear I should be a size 8 at this stage… damn you steroids!! anyway the symptom list goes on and on but as I said there’s no point going in to everything. The trip I had planned with my friend to Dublin had to be cancelled because I wasn’t well enough which I really struggled with I hate letting people down and even more so I hate giving in and admitting that I’m not well enough to do something, but sometimes it has to be done. For those of you that have been reading my blog for a while you’ll know that even when I’m feeling super rough I like to get out most days and do something but for once that hasn’t even been possible, I’ve simply not been well enough to do that which has been really tough.
Then came a nice surprise!!! My little sister surprised me and came home from Edinburgh for a few days, which was a welcome break from the monotony of not being able to do very much day in day out. We spent some quality sister sister time together which was nice. So here’s another shameless selfie which yet again took about 20 takes!!
Next it was time for a trip back down to Cork to the doctor that diagnosed me with EDS, as things were progressing so rapidly that we needed some advice. Both mum and dad came down with me, we stayed for the night because I wouldn’t be fit to do the drive in the one day, the hotel was a bit of a step down from Farnham to say the least and lets just say the pictures on the website did not match the actual room but it was only for one night so I wasn’t too much of a spoilt brat about it, haha, although not to brag or anything but the next time we go down we’re going Kimye style and staying in Castemartyr if you don’t mind! Lol Anywho the appointment went well but was a bit of a shock in some aspects, there was lots of information to take in so it was good that both the rents were there so we could remember it all. I’ll explain to you in a nutshell what happened, so he is very worried about my bowel and gut, he has obviously seen this happen before and is worried that I’ll need a feeding tube before long if we aren’t able to slow down the progression, which is a worrying prospect needless to say.My head also needs to be checked out by specialists because of some of my new symptoms. He also felt that some of my meds were harming my bowel so he wanted me to wean off them but unfortunately for me they are my pain meds, my morphine and muscle relaxers 😦 so this has been a difficult and needless to say painful process, I’m still not off them fully but have cut down a lot, it takes quite a bit of mental strength to be honest and some distraction techniques in the form of my dad walking me round the house and telling me to close the blinds……but hey whatever works!! So the big news is……….I’m going to London!!! Not for a holiday though, I wish!! There is a specialist EDS unit in London and my doc in Cork thinks its time for me to be assessed although this is a private hospital and the VHI don’t cover any costs neither do the treatment abroad scheme, so the whole thing has to be self funded!! The referral will be done in a couple of weeks time when I head back down to Cork to discuss it further and from there I will probably be waiting 6-8 weeks! It’s an exciting prospect but also scary and daunting! There will deffo be a full post on it when I get back.
I also had an appointment with my gastro and she was equally worried about my bowel and gut issues and has referred me for a test to check my gastric emptying and to confirm the diagnosis of gastroparesis although she’s pretty certain I have it. She also recommended that I go to London too and has doubled my anti nausea meds so yay for that.
So that brings us up to now, sorry it was such a boring post, I promise I’ll try to be more interesting and have some good news for my next post although to be honest I can’t promise anything. Lol. Also a big shout out to Dysautonomia support network who have picked me as their featured blogger for April which I’m pretty chuffed with, check out their website here for a look at their posts. I’ve also set up an instagram for the blog which you can see here please feel free to follow me if you want 🙂 If you’ve read this far well done and thank you!! See you next time which I promise won’t be too long!