> The Beesley Buzz: June 2018

Keeping it real with ASD and JIA

Gone are the days where my blog is my positive little space, where I try to share mainly the good news. The reality of our lives is that there are days when I feel totally heartbroken. 

Saturday was one of those days. Miss T has enough to contend with battling with her JIA and the weekends are especially tough.  We've moved her injection day to Saturday as we didn't want it to spoil her whole weekend. It used to be Friday evening, but then the nausea would often hit on Saturday morning so by switching it to a Saturday afternoon at least she can still get to her drama class on Saturday mornings. 

But the nausea does still hit her - more often that not lately. And it is heartbreaking to see her take herself off with her sickpot and deal with it herself on her own without making any fuss at all. This was her on Saturday and after weeks and weeks of telling people that 'Miss T is doing fine' and quietly hoping that things will improve I finally took to instagram to show what the reality of weekends is like for kids with JIA... 

Sometimes it is a bit of stomach bile and we see her shudder as she brings it up, sometimes it is just a feeling of nausea and thankfully nothing actually comes up, and sometimes it is full on vomiting. 

We haven't yet figured out why sometimes it is worse than other times - it doesn't seem to matter what time she eats or whether she eats before or after her injection. We do notice it is worse if we have a car journey the following day as it seems to cause travel sickness. Sadly she doesn't react well to taking any anti-sickness medication and that can actually make her more sick - We've tried phenergan, stemetil and even odansetron. She hates the taste of taking them and she does seem to vomit more on the occasions where we have tried giving these meds. 

So back to Saturday, not only did she have her usual sickness struggles to contend with but J had one of his big ASD meltdowns - this seems to have become the norm at weekends and it is tough on all the family.

Miss T took herself off and came back with this note which brought tears to my eyes... 

"When Josh gets angry it's like a storm and the waves crash together. They go up and down. Sometimes I get scared. When Josh gets angry I just want to go upstairs. I don't know what to do."

And I find myself heartbroken and lost for words for how to help her. And how to help him. And I don't know what to do either.


5 month update - Younger Hip replacement surgery after JIA

At the end of the week (23rd June to be precise) my new hip joint will be 5 months old. As I didn't feel the need to do updates beyond week 6 / week 7 back in March, it seems that life returned to enough normality by then. 

After the Easter holidays and once Miss T was back from her physio rehab at GOSH, I felt up to returning to my volunteering duties at girls brigade and at Miss T's school so I remember that feeling very much like a milestone. 

My GP referred me for hydrotherapy recently which consisted of 6 sessions over a 3 week period in May in an attempt to increase range of movement. 

If I'm being perfectly honest, I do feel disappointed that the range of movement with my new hip is not anywhere near what I hoped it would be. And whilst the intense night time pain has gone, there is still a generalised stiffness in the hip area especially after periods of sitting in one position. I had always imagined that was due to the actual damaged bone but it seems that everything surrounding the joint can seize up too. 

Sadly my back pain is also still there - that was one of my main motivations for having the joint replaced and for a short time I had thought it had worked - possibly being masked by the initial pain relief medication I was on and then being at home more during recovery meant I didn't 'over do' things with my back- which is one of the triggers for the more severe pain in conjunction with a morning stiffness kind of pain that happens daily regardless. I'm still hopeful for more improvement as the doctor and physio said that it can be a full year before knowing how successful the surgery has been. 

Standing for long periods or movements to strengthen the correct muscles (which I can feel are not yet as they should be) can cause the weird clunking in the joint. I'm hoping that as those muscles that haven't been used correctly for 30 years start to strengthen properly that the clunking will reduce. 

The regret of having had the surgery has now totally gone as those horrendous sleepless nights and difficult early days are well and truly in the past. I realise now that I didn't have any real choice about the surgery as the pain had got so bad when it wasn't being controlled with medication (both prescribed and alternative remedies). 

And I actually feel proud of myself for getting through the worst of that time. I wasn't mentally or emotionally prepared for what my body went through and the fact that I have got through it, I'm sure has made me stronger as a person. 

It's also amazing how many of us there are out there with our bionic hips. In recent months I've bumped into people on train journeys who have had hip replacements, in the online world who are also 'younger' hip replacement patients and have been a huge inspiration to me, and even in real life I met a young lady in her twenties who had her hip replacement when she was just 10 years old! 

I'm conscious of doing everything I can for there to be as successful an outcome as there can be with my hip so I am remaining dedicated to doing my own physio exercises and stretches throughout the week and have been added to the waiting list to attend a few more sessions at the hydrotherapy pool to build on the exercises that I had learnt. My physiotherapist has updated the exercises I do at home to really target the most-affected glute muscle as well as showing me some new stretches. So in many ways although I'm 5 months on and over the worst part of the journey, the hard work and commitment still continues on a daily basis. I'm inspired by seeing Miss T remain committed to her daily physio regime and so I know I need to do my exercises too however much I feel like giving it a miss at times. 
Standing strong together as #JIAWarriors