Neurophysiotherapy

If you asked me 4 months ago if I would be under neurology I would have laughed. Through my illness and all my sports I have never needed any neurology input or intensive physio input like I am getting just now.

This physio is so tough and really hard work. Physio previously has been hard work particularly when coming back from injury in sport. There would be a lot of hours put in doing exercises to strength the muscles surrounding the injury and then stabilising the injury and building up from that but this is so different.

45CAA805-1B5A-4383-BCC4-202632C86964_1_201_a

(the gym in the neuro physiotherapy department)

I have had a wide variety of injuries over the years requiring physio input and more often than not it is a 8-12 week recovery. Naively I went in to my first physio appointment thinking that it would be 12 weeks max and I would be back to where I was before. It really didnt sink in until the 2nd physio session that I would be in this for the long haul.

The second physio session I just broke down. It was out of frustration. I was given homework to try and stimulate feeling and sensation in my leg using different textures. I was running through what I had to do when I asked when will the feeling come back. That question is like asking how long is a piece of string. There is no answer. It is doubtful that all the feeling will come back or even if any feeling will come back. When I heard this I just broke down. I was already on the edge when I was going over my home work with the physio as I knew I should be able to feel the glove, towel, and velcro on my skin but I couldn’t. I felt so strange because I know what I should be feeling but I just couldn’t feel it. Im young. Im supposed to be able to feel my leg.

I have managed to balance myself out and know that this is not going to be a quick fix but I am also aware that there might not be a fix. My physio sessions focus on what I can do and how I can get back to being as independent as possible. A lot of the work is making my knee and hip more aware of what my leg is doing rather than my foot doing it because well I cant feel my foot!

It is really hard work. Harder work than I ever thought it would be. I mentally need to keep my head in the game and stay focussed no matter how tough it gets I need to get my independence back and being able to walk semi normally!

I am so grateful for the neurology input and neurology physio I am getting as I know others who have waited a lot longer than I have. I am still waiting for various tests on my nerves which will come in due course.

#HealtheVoices 2019

I am super excited and cannot remember if I posted about this before but now that everything is getting to the final stages and it is really going to happen I thought I would write a post all about this next exciting opportunity.

fullsizeoutput_2d4c

HealtheVoices is not something I had heard. Fairly recently while looking on Twitter I came across them and the conferences they have done as well as the amazing patient advocacy. HealtheVoices provides a ground breaking leadership conference for those involved in advocacy for their own health conditions, the communities around them and others as well. The conference is to empower those in advocacy to continue the work they do and get as much impact as possible from it. They have been organising these conferences and this year it will be their 5th event.

I can’t remember applying for the conference or filling in the form so when I got an email in January asking me to be a speaker and lead a session I was shocked but also had a huge sense of pride that despite asthma dictating my life I have had so opportunities as a result of it which are truly once in a lifetime events.

The event this time is over in America. I fly to Dallas Texas in a weeks time and am so excited. I have never been to Texas and will have the chance to have a few days being a tourist out there to.

We have just got off possibly the biggest conference call I have been part of. I think there were 69 participants in total. Most of these people were members who are coming to the conference and not all speakers. They said there was well over 350 applicants so to be short listed to give a talk is probably one of my greatest achievements.

The one down side (if you can call it that) to this is I have had to 1) prepare what I am going to say and 2) put together a power point presentation. Many who read this will know my aversion to slides and my slight aversion to preparing. As Allison would say I just like to wing it or busk it!!! For this though I cant. So I have put together some slides myself which I think look ok just waiting on the legal team to give them the ok! I have also written most of my talk. 45 minutes is a long time!!! I will be giving my talk a test run with my Mum so fingers crossed that goes well, may even run it by my little brother too depending how brave I am!!!

Public speaking is something I have grown into. A good friend of mine and PPI colleague Elisabeth likes to recall the story of when we first met when I was so shy and quiet that she struggled to hear me speak. Now she struggles to get me to shut up!!! With every talk I give I can feel my comfort with speaking grow. I still get very nervous at certain events and was so thankful on some occasions that I have had a lectern  to stand behind because my legs were shaking so much but on the whole I feel ok when I am speaking.

I am so proud to be able to go and share my story and tell others about how great being involved in research is, all the different things you can do and how to get involved. I am also teaming up with webMD too which will be awesome as they have a huge online platform.

Will be tweeting and blogging from the conference if there is time although it seems like a jam packed program. The conference will be streamed live so will post the link for this when I know it. Remember though there is a time difference!!!