BarbaraJS's Journal

Its been a while since my last entry. Things have been pretty much up and down.

I can't remember whether or not I told you that was turned down for disability, well that sent me into a little tail spin, and then to make things worse, I have started falling down at least 3 times a day. My legs are just giving way completely. I cannot even get out of bed in the morning, and my hubby has to help me, and even then, when he thinks I have my balance and lets go, I just collapse again. This has been happening for the past 6 weeks or so.

I have also been having such pain all down my spine, each time I take a step it feels like hell, and lying down? Don't even think about lying on my back, and even my side sometimes is impossible. I have my magnets strapped all down my spine, and they are doing their best, but I am very worried that it is the disc at T4.

Anyway, back to the disability - I followed a friends advice (who all said appeal) and went to the Citizens Advice Beureaux (for those in the US it is an organisation that offers free advice, anything from legal, to filling in forms for state benefits, debt problems - anything and everything). I went to see them with Pete (my husband) and he was sceptical to be honest, but they read through the letter that I had written trying to correct the form that I had sent in for the disability. Apparently it is the hardest of all the state forms to fill in and only 47% of people who apply get it, and alot of them have to do it by appealing.

They thought the letter was good, gave me some pointers, and suggested that I kept a diary for two weeks detailing my problems with my mobility and care needs. I did just that, and day by day I was getting worse. I went back to them last Thursday and saw a different guy. You couldn't have hoped to have met a nicer and more helpful guy in the world. He suggested that we fill in the form again (well he fill in the form - that is the same thing that happened to my friend) as they are trained to answer the questions in a way such that you can get the most benefit (not cash, but you know what I mean) out of it. He then rang up the department at state, and asked them whether we could send in another form along with my accompanying letter and diary, and they said yes. He also advised me to get a colleague to write a statement about my mobility and care needs during the day at work, because most of the stuff details things at home. I have duly done this and send it off on Friday morning.

Anyway, the same day as my visit to the Citizens advice beureaux, I had an appointment with my neurologist, who is doing my pain management. I turned up in my wheelchair (I am not happy going anywhere alone without it at the moment because I stumble, lose my balance and hurt myself.  I told him all of this, and about the pain in my spine etc, and he literally said, lets go. I said "Where to?". The MRI department. His first thought is my neck, but he said to the receptionists, I want this MRI this week, and I want the resutls by Thursday. Mark it Urgent. Now this started to panic me a little. The ironic thing is, before that I told him about the increased pain, and he told me to start decreasing my Tramadol! Neither of us think they aren't working as well as they should as I have been on them so long, and with the cocktail that I am on, - I have had to up my clonazepam to 3mg per day just so as I can lie still in bed.

I am also suffering severe dizziness at the moment - will go to the GP tommorrow. Anyway, I have my scan on tuesday, and see the consultant again on thursday with the results hopefully to find out whether there is something that can be operated on, which to me is a good thing, because it is something that can be fixed, or whether there isn't which means this is my life from now on. Pete and Ben have been so strong and helpful bless them, Ben is having bad dreams and I am worried that they are about me falling - he sees me fall a couple of times a day and if I am out of his eyesight, then he is constantly asking me "Mum are you ok?" He is 5 years old for goodness sake. He shouldn't have to worry about me like that. That is what breaks my heart. As for Pete, I have no idea what is going through his mind. He is being a real trooper, and being really loving, but seeing me like this, what must he be feeling. I guess that its a good thing that I am seeing the Pshychiatrist for the first time the day after I get the results!

My friend (whose husband had a stroke about 3 years ago and gives me such great advice) said that I should encourage Pete to get some councelling of some sort, but he will not hear of it at all - he's putting his head in the sand, not talking about it to his friends etc, and keeping it all cooped up inside. Surely that can't be good for him?

Anyway, back starting to hurt - having to use my home office computer today because my laptop fried on Friday. A funny smell started coming from it, and it turned itself off. At least its a work one! Hope they supply me with another one cos its easier writing from my armchair sometimes (that's probably why it overheated and fried) but why are they called laptops if not to sit on you lap that's what I say.

Anyway, I shall fill you in when I get the results.