Just thought I would update you all on how my physio therapy session went today.

It wasn’t a brilliant start to the day as I woke up in an excessive amount of pain and managed to annoy my right hip without even trying. Before even going to physio I doubled the morphine as the pain was bad!

The physio therapy is actually taking place in the hospital where I was born, its no longer a maternity hospital but both my sister and I were born there many moons ago! The first thing hubs and I noticed was how lovely all the staff are. A member of staff worked out that Hubs and I were lost – probably through the raised voices whilst we were arguing about which was the best way to go! She stepped right in and took us to the department, joking with us that the place was a rabbit warren! I couldn’t believe it, at the big hospital none of the staff could give a hoot if you are lost they keep their heads down and keep walking. If you need help you have to actively approach them. It just shows what a difference there is between a small hospital and a large one.

We were seen early!!! I should have made sure you were sitting down before I said that! Bev was absolutely fabulous explaining that she has several patients with EDS and POTS. She also went through the fact that benign joint hypermobility syndrome now no longer exists as a medical term and it all comes under EDS 3 (hypermobility). Its a shame that most of the Dr’s I deal with still don’t understand this.

I spent the first 40 minutes going through medical history, what joints cause me the main problems (I told her it was easier just to tell her that the only things that don’t hurt are my toes!), What medications I am on, how Hubs supports me, Hubs health problems and who looks after him, so he can look after me. It was extremely thorough, she even asked about social activities and hobbies. Hubs pipped up and said “she has a blog and loads of people read it” Bless him hes so proud of me that I’ve had over 2,000 hits! I can’t face telling him that some people may just find this blog by accident and not actually read any of it!

I then had to do my party tricks for her, these are the standard movements that EDS people have to demonstrate they can do. So the first one is putting your hands on the floor without bending your knees (piece of cake), then it was put the back of your head on your back – I didn’t realise that wasn’t normal until a few weeks ago! Then bring your thumb to your forearm – check both sides. Then it was do your fingers go back more than 90 degrees – all my fingers do other than my thumbs. So EDS was confirmed again but she was concerned that my heart hadn’t been checked out yet for a mitrial valve prolapse which is more common in EDS patients. With my paternal grandfather having two aneurysms it is possible I could have vascular EDS, so it needs to be ruled out. She will be writing to my GP about this and the fact I am not under a rhuematologist, which I need to be.

I am now banned from performing party tricks! As they are damaging my joints and making the ligaments and tendons lax. Bev hopes to teach me what is a normal joint movement and what isn’t. Its very strange as normal feels restricted and weird. Doing things the EDS way is comfortable but in the long term is making things weaker.

Bev also thinks that my nervous system is a bit confused at the moment as its perceiving just a light touch as a painful stimuli. Her finger literally touched the back of my neck and I was yelping. I felt like such a baby. She said my brain needs retraining on what its sensing as its over reacting. I said it makes me feel foolish as I know it shouldn’t hurt but it does. She was so kind and caring she told me if it hurts it hurts, my nervous system is out of whack and we will put it right.

Ive now got a couple of very gentle exercises to do several times a day. I have to start with two repetitions and slowly work up to five. We are working on my core muscles – very low stomach muscles which I have to tense for a couple of seconds and then release. Its quite funny as when I did this I incorporated pelvic floor exercises as well. Bless hubs he pipes up “whats your pelvic floor?” Bev and I looked at each other and I turned to him and said “its your fanny muscles” (for my American readers an English Fanny is not the same as an American Fanny). Bev fell about laughing and then tried to explain to hubs, who was now beetroot, that blokes have pelvic floors as well!

I explained to Bev that these trips to appointments over stimulate me and that I will end up in bed for a few days due to exhaustion. She said that we would always in that case do our sessions in a private room so I didn’t have any noise from other patients and staff. I just couldn’t believe how thoughtful she was. She also didn’t tell me to ditch the wheelchair, she understood with the POTS walking isn’t an option for me. It was wonderful to actually have someone in the medical profession that gets it.

Our session ended with Bev asking me what my goals are. I said “I want to walk on the common with my dogs for hours, I want to go running again.” Bev looked me in the eyes, put her hand on my knee and said “Rachel that’s never going to happen” I know shes right. She continued “by having that as a goal you are setting yourself up for a big disappointment. How about our goal is this time next year you can do two ten minute walks per week”. I said “I can live with that. I know I have to accept life isn’t going to be the same again, its just really hard. Even though its been 4 years I still can’t quite admit to myself that I can’t do what I used to and never will”.

Even though I’ve had that conversation and admitted that I won’t be able to do it I’m still in denial. I think I just don’t want to face it as the idea that I will never be able to do it breaks my heart. Its like the fact I use a wheelchair, yep I use it but I still can’t accept I really can’t walk very far. I suppose in a way its a coping mechanism and human nature, to try and banish those thoughts from my mind.

With Bev my physio I know she isn’t going to sugar coat it, she’s going to be honest with me and shes going to be a partner in my journey. She’s just what I need right now.

Thanks for reading, blessings xxx

Ive had to edit the post as a paragraph disappeared. Sorry.

Its Tuesday…..

Its Tuesday……

What can I say?

My MG like symptoms have disappeared for the time being and I haven’t had to take mestinon since Saturday night and I haven’t used oxygen either.

I am having problems typing as my ring finger and little finger on my left hand keep curling up towards the palm of my hand and I can no longer straighten them. Its been happening for a few months now I am pretty sure its called Dupuytrens contracture – another connective tissue disorder. My maternal grandfather suffered with it, its genetic but Dr’s also blame smoking……Well they are just going to have to shout at me over that one. I don’t go out, I barely drink I have problems eating, smoking is the one thing in life I enjoy. I just don’t feel like giving up at the moment. Its my emotional crutch, its all I have left from my old life.

It feels like a dirty little secret that I smoke. I am ashamed of the fact that I am a slave to nicotine but don’t condemn me as I’m not forcing it on you. I don’t smoke around kids, I feel it sets a bad example. I don’t smoke in my house as it wrecks the decor and makes the place stink. I know my parents would be over the moon if I gave up. Its just I don’t want to, when I do I will make the effort. Life’s hard enough at the minute without adding to it.

At present it feels like it doesn’t matter how many hours I sleep I still can’t re-charge my batteries. I’m constantly exhausted, my mood is a million times better but I still have no energy. I am blaming the heat and the strange changeable weather we are having at present. Its raining here today…..thank god it saves me nagging hubs to water the garden later.

So I don’t have much news but I thought I would let you all know how I am after last week.

Tomorrow I have my first physio therapy session…….wish me luck. All I ask is that I don’t end up in more pain than I am already and the woman understands about POTS and exercise intolerance!

Thank You

I just wanted to do a quick post and say a big thank you to those of you who have read my blog and taken the time to leave comments. It really means the world to me to know you care so much about me.

I bit the bullet yesterday and took 60mg it worked within 20mins and lasted 6 hours. However I did have some stomach cramps and a lot of gas! Not very lady like I know! My vision in my right eye was still blurry but I could see well enough to get on with bits and bobs.

Today I’ve had ptosis but it was just my eye brow drooping which made me look like I had a lazy eye. I have had more breathing problems today and have ended up using oxygen for a couple of hours. I had the old MG feeling back where you breathe but just don’t seem to get enough air in to satisfy you. I took 30mg of mestinon which resolved the ptosis and made my breathing easier.

My tum is a bit raw from the mestinon this week. It is extremely unusual for me to take it more than once in a week. I only tend to use it if my eye closes completely, or both eyes close or I can’t catch my breath. I have ptosis everyday but its usually very slight and doesn’t close my eye just makes the lid droop, on those days I just tend to get on with it as believe it or not I actually don’t like taking tablets. It seems ridiculous for someone who takes over 20 tablets a day to say that, but I only ever take what I need. If I can do without the mestinon I don’t take it. Plus the side effects of mestinon are enough to put anyone off!

I can’t remember who suggested 45mg instead of 60mg but thank you. Why I didn’t think of that (slaps forehead!) I don’t know but I think that might be better than 60mg at the moment. Also special mention to Rachel again …..thank you for looking up EDS that is so sweet of you. Unfortunately it is a painful disorder that not only affects your joints but your organs as well. The problem I have is I get weak muscles from both the POTS and EDS which causes my joints to be unstable. Hence my spine popping discs out left right and centre. If I have MG as well, (which come on its highly likely) what chance do I have with that making the muscles weak also!!!

Thank you again Em, Shalyn, Rachel, Minxy for your lovely comments. Sorry if I have missed anyone out. Going to finish up here as getting short of breath again and Hubs needs to get my oxygen up to me. No need to panic this happens a lot. I will also be taking 45mg of mestinon as that helps as well.

Thanks again xx