Month: July 2011

Physio…..what to do?

/ RachelMorrisMcGeethemyastheniakid / 1 Comment

As regular readers will know I have started physio therapy and have had two sessions in the last month. I know that I am not going to have miraculous results in just this short time but at the moment I am wondering if its worth continuing at all.

I have had good results on the hip stability front they no longer feel like at the slightest opportunity they will slide out of joint. That’s an excellent result, however my muscles are fatiguing so quickly that I am lucky if I can do more than 3 repetitions before my muscles start jerking all over the place. I have been doing the exercises at least twice a day sometimes three times a day but my muscles are not getting any stronger. They are showing signs of muscle fatigue that is common in the diagnosis of myasthenia gravis. Bev advised me that once the movement goes from smooth and controlled to jerky that I am no longer using the correct muscles and have stopped being effective. Imagine my frustration that after three weeks I am no further on than I was in the beginning.

At my last visit I was asked to do some extra stomach muscle exercises. These hurt but I can cope with muscular pain after completing them. I would expect sore muscular aches and pain as my body is so out of condition. What I didn’t expect was that the stomach exercises would irritate my bowel adhesions leaving me in incredible amounts of pain underneath an abdominal scar. The pain has become so intense that its now once again hurting when I eat as my intestines are caught up in a web of scar tissue. I am now doing the exercises every three days so that I can keep the pain at a level I can deal with.

I will be honest I have been a bit lazy with my neck exercises as I noticed when completing them I was ending up with more headaches and migraines. I spoke to Bev about this at the last visit and she said it could be the muscles getting tense or going into spasm. Unhappy with this explanation I stopped doing the exercises and the headaches have disappeared. Unfortunately it coincides with when my dose of steroids was altered so I don’t know what has caused the headaches to stop. I have now started the neck exercises again to see what happens.

I was also supposed to be increasing the amount I walk by 10% a week, I just can’t do it. Any increase of walking means more back pain and hip pain. My hip pain feels like the two bones are grinding together the back pain means my spine locks up and I further reduce my mobility.

At the moment I am seriously considering ending the physio as its causing me more pain and other problems. I will give it a bit longer before I make my decision. I knew physio would cause me muscle aches and pains due to the state I am in. I wasn’t prepared for the whole host of other issues that have come along.

Crazy Times!

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

Sorry yet again I have been MIA for a week, I’ve actually been a bit of a social butterfly. In the last ten days I have seen more people than I probably have in most months. Its been lovely but I have to say I am totally exhausted!

Last week I had physio on Monday and as you know from my previous posts it was disappointing. Bev wanted me to introduce some stomach muscle exercises. I have tried to include them but unfortunately they cause me a great deal of pain as the irritate my bowel adhesions. Something neither Bev or I expected so Ive had to forget doing those as despite being on morphine any movement after these exercises causes me quite a bit of pain and then makes eating very uncomfortable.

I also can’t do one of the other exercises as it upsets my back sometimes it feels like I make one step forward only to take two steps back.

I am now taking florinef on alternating doses and it seems to have reduced the headaches I was getting. I now take 200 micro grams on one day and 100 on the next the headaches have gone (fingers crossed). So that’s a great leap forward as the headaches were very incapacitating.

I am completely exhausted I am just waiting for hubs to get back from taking Mollie to the vets. As she is on medication for her spay induced incontinence she has to have 6 monthly check ups. All hell will break loose when she gets back as the other two will get a bit snappy when she returns! They are quite funny in the fact that they get really peeved if one of them goes out and they get left behind. Hubs is going home via the pet shop to get some treats to hopefully ease the tension when Mollie returns.

On Friday our friends J and K came up and visited us for a few hours. Mollie went crazy J and K bred Mollie and they were on the verge of keeping her as the owner backed out due to a change of personal circumstances. Shes Travis’ sister (different litter) its lovely that we have her as it our link to Travis after his death at the age of 2 years 11 months. Mollie stayed with them until she was 12 weeks old an important time in a puppies life and she goes absolutely crazy when they visit. When I was well we used to visit J and K quite regularly with Travis and Mollie so she has never ever forgotten them. She absolutely adores them and its lovely to see.

Later that day Amanda came over and spent an hour or so with us. It was great to see her as I hadn’t had my Amanda fix for well over a week! Saturday I went and spent the day with my parents at their caravan. A change of four walls was certainly needed! It was a beautiful day and I spent most of it outside in the sunshine lying on a sun lounger. To be honest I stayed too long and ended up getting over tired but I don’t mind spending spoons on an activity like this.

Sunday I woke up in horrific pain I had been messing about with my mum showing her some party tricks! Mum still thinks she doesn’t have EDS but how many 55 year olds do you know that in a seated position can raise one foot up past their waist? I had to go one better and had one foot on my shoulder and then tried to get my foot behind my head ….. which worked! It didn’t hurt at the time but Sunday morning my body was letting me know it really wasn’t happy!

Our friend A came over on Sunday as a surprise bearing a caramelised orange cake. I never turn away visit that involves cake (evil chuckle!). A stayed a few hours and it was great to see him as well. Monday was my day of rest and believe me I needed it. I slept for the majority of the day and still was tired!

Tuesday Ellie and Mr G came over for dinner. Imagine an episode of come dine with me! I’m just glad we haven’t poisoned them! We made a chicken madras and a vegetable madras for me as I am vegetarian. It was a brilliant evening as Ellie and Mr G brought over a blue ray DVD of aha in concert. In my youth I was a massive aha fan and it was scary that despite not having played any of their stuff for years I knew all the words. My relationship with aha went sour when their lead singer announced he was getting married! I remember crying into my weetabix before school on hearing the news announced on Radio One! I was besotted with Morten and I couldn’t believe he had betrayed me in this way. Oh the follies of youth!

Yesterday I spent a fantastic day with Amanda, shes got a brand new car so she took me for a spin! We went down to the sea front and had an ice cream. It was a beautiful day and we could see for miles. I couldn’t believe how busy the beach / seafront was. Its odd how far removed I feel from normal everyday life as we drove around the town so much had changed it was like I had moved and just hadn’t noticed. Very bizarre!

Today will be a recovery day for me and probably Friday as well. Before I go I have to share this photo with you.

This is Frankie, Willow and Mollie all taking over the sofa! Its so rare that all three are together in one place at one time! I sent this photo out by text message to a few friends with the message “so where are you gonna sit!”

Spoilt rotten! Thanks for reading xx