Recovering from surgery with Hypermobility Syndrome

It's a bright beautiful sunny Sunday and I am stuck on the bed. I should start by writing that it has been a good week. I was so relieved to be home and thanks to the pain team organising me a lay flat ambulance the journey wasn't too awful.

On Tuesday we decided to give Amelia-Rose a day off school. At the moment we're finding she is a little emotionally fragile (I will write a separate blog entry about this tomorrow) so, as we missed most of half term as we were in hospital we decided to give her the day off Tuesday to settle back into being at home. We also felt that it was very important that she also saw that I was settled in and was ok.

Wednesday we got it really wrong in the morning and I really struggled. Understandably Tony decided not  to not wake me up until I was needed, this is the point that it is time for Amelia-Rose to get dressed and have her hair done. Of course though this meant that I was taking my pain medication as I was needed to be physical and it hadn't had chance to kick in. In fact even when they actually left for school my pain medication still hadn't set in. As you can imagine it wasn't easy.  I was in far too much pain.

The rest of the week was nice, I had a lot of visitors and we learned that Tony does have another week off work before he has to go back. We were nervous it was this monday.



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There are gremlins in my laptop!! It's Tuesday now and I have been trying since Sunday to finish this post but the curser jumps all over the place, I'll be happily writing and mid word it will jump back and jumble all the words around then suddenly highlight everything and delete it all!

I've tried doing a cleanup but it says that google chrome is running even if it isn't! I don't know what is happening but for a writer is is infuriating! So where was I? Last week was really very positive, this week thought he fatigue has well and truly set in and I am exhausted. Actually I am beyond exhausted. I am really struggling.

Yesterday was a toughie. A (nother!) mix up with my prescription meant that I was left from 9am until almost 6pm with only paracetamol as I had run out of my pain medication that I get on monthly prescription. Good Lord it was painful. Every pain I have in my body I felt. My lovely husband kept telling me how proud he was of me and although I had a wonderful visit with my mum and my nephew I can't help but feel like since Friday I am missing days.

I find it very difficult when I feel like I miss days that I can't ever get back.

In terms of recovery I am doing very well. My incisions are almost completely healed although my leg still burns and stings like I don't know what! I took the bandage off over the weekend because one of the stitches was actually poking out through the bandage and I thought maybe that was what was causing the stinging, perhaps it was pulling it. I was wrong.

It's tricky recovering from surgery with hypermobility syndrome because you still gave all your normal symptoms to contend with!

My gastro problems are much the same. I still can't eat without being sick and I am at the moment event unable to keep down my meal replacement shakes. I am thinking about diluting them but at the moment with the extra pain in my hip I can't bare the thought of being sick.

I had my appointment with my counsellor today and she said she is really concerned that my gp isn't taking this more seriously. I am waiting to see a gastroenterologist who has a special interest in hypermobility syndrome but in the mean time what? I am getting literally no nourishment, I am just so exhausted.

I just need something, anything in the meantime to keep me going and the doctor is treating me like this is my choice. Like it's a decision I've made not to eat.

I am thinking about doing a course, as I continue to recover from the op and am now use to the various side effects of the new medications from the bowel meds I really want to branch out and try something a bit new. I want to do a writing or art course. It would be nice to have something every week to look forward to. I need to get a new routine going I think! Something that will help combat the exhaustion, give me something to focus of and try to work through the fatigue.  It would be really nice to have some structure back in my life.

I look forward to starting something new, whatever that may be!

Before the gremlins got into my laptop I was doing a lot of writing, I have started a novel which I am really excited about. I normally do most of my writing over night but I was put on these sleeping tablets because when I relax I get these muscle spasms that cause me to jerk, normally they are nothing more then annoying but when I was in hospital each sporadic leg kick was agony! They put me on these sleeping tablets to knock me out before the jerking started and boy do they knock me out! Clean out!

I am getting the best sleep I have had for 10 years YAY but I have lose my writing time BOO.

I'm sure I will find a new time!

I'm sorry this post is a bit all over the place, honestly, it's just this damn fatigue. I promise I will write more efficiently as soon as I can.


Hey p.s small victory I managed to cook tea for Tony and Amelia-Rose today! :-D

It's my birthday tomorrow, I will try to write a reflective post over the past 12 months if my brain fog lifts and the sun comes in! I have been promising myself after my birthday I am going to treat myself to something wonderful and I have one of two things in mind.... ;-)