Happy New Year ….. a little late!

Well I hope everyone had a good Christmas. Hubs and I had a quiet Christmas just us and the dogs but we really enjoyed ourselves! The morning was spent watching my Christmas presents of Peter Kay and Alan Carr’s new DVDs. I laughed so hard my face hurt and I had to go and have a nap!

We don’t do Christmas lunch due to my stomach still being unable most days to tolerate food before around 4pm. So after Hubs had taken the dogs out the Christmas dinner was cooked. Hubs decided to not have Turkey this year and had nut roast instead. I’m vegetarian and its a pain having to cook two Christmas Dinners. It was delicious but there was far too much of it.

On Boxing day Amanda and Ellie came over for a few hours and we had a natter and watched yet more TV! It was nice to have a little gathering although hubs was out numbered with Frankie being the only other male in the house and his conversational skills aren’t up to much! On the 27th another friend popped over for a few hours, so we have been social butterflies over the festive period!

New Years Eve was good as Ellie came over and we had a curry followed by Banoffee Pie. I followed Simon Rimmers recipe and it was delicious! I don’t really like Banofee pie but I enjoyed this one. I was supposed to be seeing my parents on January 2nd but unfortunately I came down with the cold that both Ellie and hubs had been suffering with before Christmas. I felt absolutely dreadful and spent most of last week in bed.

Hubs has started his diet with the aim of losing 5 stone over the next 12 months. He has a bet on with his manager. If hubs does it the boss pays for us to have a slap up meal at Tanners in Plymouth. If he doesn’t do it he has to give £50 to the Bosses charity of choice. This was hubs plan last year before the car crash and then everything went to pot. We are hoping that he manages to stay on track this year.

The first week of his diet ends tomorrow and so far he has lost 9lb. We are hoping another pound falls off him by tomorrow so that its a nice 10lb for his first week. He really loses weight quite easily and never loses less that 3-4lb per week. The only problem he has is sticking on the diet even when he is doing so well. I am trying to eat more healthily too but despite sticking to soup and a few slices of bread I have stayed the same. At least I’m not eating the rubbish I was having before but I think my metabolism is screwed after not being able to eat and then eating and then it swinging between the two. I’m the heaviest I have been in years and I absolutely hate it.

I haven’t been up to much this week as my blood pressure has been very low and its been leaving me completely wiped out and nauseous. My EDS is also playing up my hips are killing me and feel like its bone grinding against bone every time I move.

So that’s my first post of 2012. I wish it was a little more exciting! Thanks for reading xx

latest update

Thank god its Friday, its seemed like a very long week and I am exhausted. Two Trips to the local hospital have wiped me out. Yesterday I had a three hour nap in the afternoon and went back to bed at 1730. I slept for eleven hours only waking up once at 2am when it started raining and it reminded me I needed to go to the toilet!

My fludrocortisone has been increased to two tablets a day as my blood pressure at the consultants office was 105/60. In the normal range but low if you take into account by weight, height and age. The consultant who is extremely funny said “your blood pressure has reached the dizzying heights of 105”. He would like me to go back onto mestinon regularly as it increases your blood pressure on standing, however he is doing some research to see if he can find a drug I can take that will help me tolerate it. I used to take propanthaline, with the gastroparesis this kind of drug is no longer allowed as it slows everything down. Mestinon speeds everything up digestion wise so its quite good for gastroparesis, I just find the side effects too much.

The consultant didn’t seem to find the idea of loads of physio and hydrotherapy such a brilliant idea. He told me my POTS was too unstable at the moment to be entertaining such an idea. He then dictated a letter to the Rheumy I saw Wednesday saying he must be involved in any plans she had. I did tell him that I felt she had absolutely no idea about POTS and was worried that in her ignorance she could do some damage.

Their two approaches are completely different, POTS man won’t allow me out of my wheel chair in his office. Rheumy lady made me walk the furthest I have walked in years causing me immense pain and shortness of breath. When I complained I was told “just because you are in pain it doesn’t mean its doing damage”. Tell that to my hips and back that have been in an elevated level of pain since you made me do that. At a cost of over £4 a minute she has not only hurt my wallet but my body too. I should have been stronger and said no, however non compliance never goes down well in the medical world. You become an attention seeker or mentally ill if you refuse to do something.

I have taken my pain killer cocktail today 2 Naproxen (250mg each), 2 paracetamol (4 hourly), 2 Tramadol (6 hourly) and I am still hurting. So the pain is at a five, my back has seized up and is going in and out of spasm. My wrists and hands hurt and my head is refusing to support my neck. I know I need to exercise to strengthen the muscles I’m not disputing that. What I didn’t need was to be forced to run a marathon on the first day. OK so it was a walk down the corridor but it felt like a bloody marathon. Not only that but she followed me so I couldn’t get back in my wheel chair the minute her back was turned which was the plan because I knew the amount of pain I would be in.

When I get pain like this its not only the joints but my internal organs feel like they have moved. Its a bizarre thing to say but its the only way to describe it. When my chiropractor used to manipulate my pelvis as it rotates of its own accord I was left with the same churned up feeling inside, like everything was in the wrong place.

My old chiropractor called Heather was brilliant, one of the nicest people you could ever meet. Unfortunately she moved her practice out of my town and now its too much for me to travel and see her. She kept saying years ago when she treated me that there was something very wrong with my joints, due to the way the manipulations never held and my back would just seize up so I couldn’t bend. She discussed it with her colleagues but they didn’t have the medical knowledge to know what it was. I brought it up with my GP at the time (the one my mum gave it to with both barrels) unfortunately he thought chiropractors were just one step away from witch doctors on the alternative medicine scale. So it went no further.

Since the EDS diagnosis all I have done is cringe at all the damage I have done to myself. I was incredibly active, much more active than any of my friends. I loved doing exercise video’s, running, walking, playing tennis and netball. When I hurt myself I would work through the pain. In 1999 I really damaged my back at an exercise class. We were doing the warm down and I was relaxing lying on the floor doing a stretch and then there was a massive crunch and I couldn’t move my legs. The crunch was so loud that several people sat up and turned around. That was the injury that really screwed up my back ……..done in the warm down. I had slipped discs before but this was something else. I tried to carry on but I couldn’t put my legs back flat on the floor when lying on a hard surface. I went to work the next day but came home a few hours later sobbing as the pain was so intense. I remember my sympathetic female boss at the time telling me to “suck it up and stop acting like a baby”. I was in agony and didn’t know what to do with myself.

My back has never been the same after that injury. The GP told me I had slipped a disc and to do some gentle walking. I have been left with bouts of nerve pain down my left leg where it burns or the skin becomes so sensitive I can’t stand anything touching it. I have been back and forth to the Dr’s telling them I am in pain and just got handed pills. I was around 25-26 years old and I guessed they just presumed I was young and fit enough to shake it off.  That’s over ten years ago and I am still suffering.

The EDS diagnosis has also made a lot of sense. Of course I knew that I had it, I’ve known for about a year after joining various forums and looking at the Beighton Scale and the Brighton Criteria. I had always thought I was a wimp when it came to the dentist, I would be pumped full of local anaesthetic and it would still hurt, despite the dentist telling me it couldn’t. I thought it was all in my head, that it didn’t hurt it was just my fear making it hurt. You will tell yourself all sorts of things if someone in the medical profession is telling you it doesn’t hurt.

So now I just await my torture sorry I mean physio appointment and see what they can do for me. Unfortunately it means more trips into the local hospital and more exhaustion, before I have even attempted to make my muscles stronger. Its a vicious circle but I need to do something. Even if the rheumy said she doubted that they would get my pain under control…..thanks for that love I’m 37 the chances are I will live until I am at least 80. So if I manage that I have another 43 years of pain to endure. I think I am just going to have to take it one day at a time!