January 18th 2012

Well things have been chugging along here. Ive been up and down due to low blood pressure and being very tired.

Last week my dog Willow jumped on me and managed to dislocate my elbow, preventing me using the computer for a few days. I was very lucky as it popped back in immediately but it made such a cracking noise hubs thought I must have broken it.

Hubs diet is going very well and hes now lost 12lb in 2 weeks. He lost 11lb the first week and 1lb this week. Hes been quite frustrated by having only a 1lb loss this week and has been like a diva with the bathroom scales. Apparently they don’t work, the batteries are going or they simply don’t like him!

 It was even worse when they showed a 3lb gain one day last week! Oh my god the drama! I had to explain to him that he would have needed to eat around 9,000 calories extra to gain that in one day and it was simply fluid retention! Its like having a teenage girl in the house who is a slave to the scales. It does provide endless entertainment for me especially as not really having lost anything the first week I suddenly lost 4lb and then another 1lb two days later. Breaking the news to hubs was hilarious after he had told me the scales must be broken!!!

Hubs has now rearranged his bedroom ( we sleep in separate rooms due to his snoring and my erratic sleeping patterns) and has now got the treadmill out that was bought for him 2 years ago and was only used once in that time! Since Sunday he has been using it everyday for 20minutes alternating between jogging and brisk walking. You can already see the difference in his body shape. He was complaining last night that his trousers at work are falling down!

He can’t order any new work uniform as they are on a budget freeze with the end of the financial year coming. At present there are members of staff having to wear their own clothes in as the uniform just isn’t being replaced. This week end I may have to look at his trousers and see if there is any way that I could take them in. I’m no seamstress so I am reluctant to mess about with things I know little about!

So thats all my news from this crazy household! xx

Physio…..what to do?

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.

Update on the hip saga…….

So as you know on Monday night I managed to partially dislocate my left hip. More evidence for the case that I have Ehler -Danlos Syndrome, that’s another story.

I spoke to my GP on Wednesday to advise him of the Hip saga and to get his advice. He told me all that I was doing already was correct and that if it didn’t settle I would have to go and see him. I was a little annoyed that although my hospital consultant agreed that I should see the geneticist about the possibility of the fact I have EDS, my GP felt we should wait and see how I get on with the florinef. However when I suggested I pay for the appointment to the geneticist he was more than happy to do the referral. It comes down to budgets doesn’t it, if its NHS money that’s being spent, my diagnosis can wait. If its my money I am spending I can be refereed, the conservative party health care reforms have well and truly kicked in. We are back to the two tier NHS.

Why is it OK for me to pay, when he doesn’t feel a referral under the NHS is necessary at the moment? He told me he would prefer that I stayed within the NHS, but I can’t because at the moment I am receiving no care for my unstable joints and the pain they cause. Its also very important that I get a diagnosis so that my sister can get a referral and so can her son who is also showing EDS traits. EDS is a hereditary condition, my sister and I need to conserve our joints, we need to protect my nephews joints so he doesn’t get to the state we are in. Nobody seems to want to take any action. They are looking at the short term cost of referrals against the life long cost of treatment if they don’t identify what is wrong with us. We are actually trying to save the NHS money, preventative action is better than long term treatment.

My sister ran into someone with EDS and three children who had EDS and she took one look at my sisters scar on the back of her knee and said that’s EDS. My scar on my stomach is also wide and flat, like my sisters knee scar. The evidence is just overwhelming, so why is it down to me to pull this all together. Its crazy, that I am the one doing all the leg work?

All I have done for the last few days is sleep. Today I am running a low fever, but my hands and feet are blue with cold. Despite my rip van winkle impersonation I am still exhausted. I don’t know what to do with myself. I don’t want to be continually popping pills but I don’t want this gnawing pain in my hip either. Decisions, decisions…..

In agony!

I thought I would give you an update on how I am doing today after my adventures yesterday. It’s not good.

I partially dislocated my left hip last night, although it pinged back into place immediately after popping out, I think it has damaged the tendon’s and ligaments. I knew it wasn’t going to be a simple go to sleep and wake up with everything back to normal, due to the fact I couldn’t weight bare last night.

I ended up taking Tramadol, diclofenic and paracetamol and all it did was take the edge off. I couldn’t get comfortable in bed and ended up getting up at 2330. No position was comfortable so I tried to distract myself with sorting out some photographs to send to my grandmother and writing an accompanying letter. I’ve had about an hours sleep in the last 24, I actually don’t feel too bad but that could be the sheer amount of medication floating around my system.

As my GP doesn’t work Tuesdays I am waiting to see how I get on with the pain killers. If it doesn’t settle I will ring the practice and ask to speak to the duty Dr. I don’t want another sleepless night due to pain.

I have been trying to keep as mobile as possible so that the joint doesn’t become stiff and thus make the problem worse. However every movement is just amplifying the pain. So until I get the pain under better control I have gone to bed with my electric blanket on to keep the joint warm and I have a hot water bottle on the top of my thigh. Warmth is definitely lessening the pain, its just finding a position I can tolerate that is the issue.

Its the first time in a few years that I have popped a joint, well a big joint. Its usually my knee caps that I do – excruciating! My fingers and toes dislocate daily and spontaneously pop back in, that doesn’t actually hurt that much, its the big joints that do.

So fingers crossed I can settle the pain and try and see something on my husband on his day off. Frankie is on guard duty as he knows mummy is poorly! Fast asleep at the end of the bed.

Houston we have a problem!

Houston we have a problem and oh boy we certainly do! Its very unusual for me to post twice in one day and its nothing to do with the fact that I am only 5 views away from hitting 950 views of my blog. I started this in 2008 and up until February this year I had only 400 odd views! I take part in a movie blog fest and I am getting over a hundred views per month.

I would just like to take the opportunity to say hello to the person or people who keep stopping by all the way from Iran. I hope you found something useful or entertaining on my blog and you haven’t been repeatedly visiting me by accident!

OK back to Houston, I thought I would enclose a link about the now famous phrase before continuing…

This afternoon I was stranded on my bedroom floor for over an hour. Hubs was at work, I had gone upstairs for a rest. After my rest I decided to pluck my eyebrows as they had become a little like Dennis Healey’s http://en.wikipedia.org/wiki/Denis_Healey (just in case any of you don’t know who he is! He was famous for his extraordinary eye brows). To make the best use of the light I sat on the floor with my mirror on my bed. All was well until I went to get up and found I couldn’t move my legs and I had no strength in my arms. It actually made me laugh – weird isn’t it. Hubs wouldn’t be home for several hours and although I could have called my neighbour I didn’t fancy his chances against the dogs as they can be very protective when I am sick (well sicker than normal). I didn’t need the loo which could have been a big problem. So I did what any girl would do in this situation……I started plucking the stray hairs on my blonde moustache, I mean who knows when I would get such good light again and why waste the opportunity? Thankfully after an hour I could move again, but I just don’t know why I couldn’t move to get up off the floor.

Everything was fine for several hours and then I had just gone in the kitchen and bent down to get something and there was an almighty clunk and severe pain. My left hip had slid to the point of coming out the socket and then just slid back in again. This immediately sent my lower back into spasm with me screeching in agony unable to move. My joints have been a little floppy today, my ankles have been rolling over and my knees have been sliding around a bit too much.

 Hubby immediately started to apply his very hot hands to my lower back and gently massaged the area. I was in a state of shock normally he would panic, but he was so calm, he just kept applying his hands and then gently eased me up into a standing position. As I was hunched over the kitchen counter top. He stood directly behind me using his body as a support for mine. It was absolutely fine until he said “I hope no one can see us” as to a casual bystander it could look quite rude! I was in absolute fits and it was enough to make me completely relax the muscles.

So I am now tucked up in bed with my left hip throbbing and lower back randomly spasming. Electric blanket is on and painkillers have been taken. Yep I had to take the dreaded tramadol, if its still bad tomorrow I will contact the Dr and see if I can get some diazepam to http://en.wikipedia.org/wiki/Diazepam    to relax the muscles.

Sorry I have gone a bit mental with the wiki links at the moment!