Hey everyone,
On the 3rd of May I'm to travel to the Job centre to discuss me going back to work. I was talking to my husband about it and I was trying to work out how I can get around my medical condition and work a full days work to support a family.
My day consists of going to sleep around 3am although sometimes its later or I don't sleep at all. I have got so used to casino programs or shopping channels, I've even laid in bed guessing which number is going to win on roulette. I have found that BBC news is the must interesting programs at that time of night. You have Hardtalk, interviews, American news and Click, I have found them actually quite interesting. Sometimes when the pain is really bad I have to resort to taking Amitriptyline.
I tend to sleep through the morning waking up around 1pm. There have been plenty of times my husband has tried to wake me up but I can't even open my eyes they roll into the back of my head and I just lay back down, when I finally wake up I have no recollection of my husband trying to wake me up. I doubt I'll be able to wake up at 7am, get myself ready and travel to work especially if I've had to take Amitriptyline as it knocks me out for over 12 hours. I can't even wake up and help my husband get my son to school.
When I am awake it takes me around an hour or two to actually be coherent to whats going on around me. I tend to just stare out into space and not understand or able to take in any information or hold a conversation. As soon as the words are spoken to me my brain has forgotten them. I doubt that I would be a very productive employee. During this period I take the time to let my body "warm up" a bit then my husband helps me out of bed and to the toilet. Sometimes I have to wait as my husband might be feeding or doing something with our son so its when he is free. From the toilet I'm taken to the sofa where I will take my medication (which at the moment isn't working at all and I'm waiting for my appointment at the pain clinic for an alternative) and have a cup of tea.
I will spend the day either laying on the sofa trying to cope with the pain while my husband feeds, waters and takes me the toilet or I'll be able to do a little moving around. When I can move I'll do small amounts of housework and spend time with my kids. Then I go to bed to start it all over again. This happens day in, day out the only times things change is when I have things to do or appointments. This means that I have to make the ordeal of climbing down the two flights of stairs to usually the cab to take me anywhere I need to be.
How can I work? Its not because I don't want to as I loved being a Dental nurse and would love one day to go back to it but there is no way I'd be able to keep up with now. If you can find me a job that can exist around all my medical problems and appointments as well as paying enough to support my family and disability I will work. When you have an invisible illness you have no dignity anyway without this government and media dragging us down into lower depths.
Just think for a minute what it would be like to be 23 and to have your independence stripped away from you where your partner then becomes your parent. Where you can't even go to the toilet by yourself and you live in constant pain, then you have to go to the Job centre to defend why your not working and prove why your worthwhile for the tax payer to pay for rather then letting you rot.
Hey everyone,
I've had a really good Easter day but man its been exhausting. It started with getting up around 10:30am despite going to sleep around 3:00am to watch the boys run around finding their Easter eggs. We then went to my mothers house who had arranged a egg hunt for her grandchildren.
I was hurting badly before I got to my mum's as I haven't been great for the last couple of weeks. I've had real trouble sleeping and my pain levels have been really high, on top of all this taking Amitriptyline has caused me to be more tired when I'm awake and I've had very vivid dreams where I can't distinguish which is reality and which is dreamland. Some of these dreams have been nightmares and I've not been able to wake up and know there not real or have woken up but instantly dragged back into sleep by the drug to continue the dream. At times its been a truly terrifying experience.
While I was at my mum's I tried to help as much as possible but as I did the pain in my legs kept increasing and my feet swelled up. It came to a head when I reached over to get a baby bottle for my little sister who had my nephew and ended up spilling my drink everywhere. It ended up causing a right stink and I felt so guilty. I hate it when my body fails on me, I don't want to have to sit there and call someone else when I'm there.
My husband and sister carried me upstairs and helped me change into clothes of my mothers while my mum washed mine, there was also the clean up to be done. It caused arguments from the frustration of having to clean a spilt drink and the clean up of myself. I was scolded for not asking someone else and not resting, I felt like a child being told off. I felt so childish and stupid, I'm turning 24 next week and I can't even have a drink without spilling it! I am like a child and its frustrating for me let alone the people around me. I felt like crying because I was deeply sorry for it and because I felt so useless and a nuisance to everyone. Through my inability I had caused arguments and frustration.
I came back down the stairs to things being cleared up and a chair in front of the paddling pool so I could put my feet in. By now my my feet had swelled so much they looked like big puff balls. I put my feet in the water and it felt really good, my feet had felt like they were on fire and every step was like stepping on hot coals. As I sat there with my feet in the water I noticed that they were still swollen but my toes were blue and the rest of my foot looked like it had a rash. It looked as if every blood vessel had risen to the surface of my foot. As I sat there eventually my foot began turning back to its normal size but was turning blue so I toke them out.
The rest of the day and evening I toke things easy and mainly had people do things for me. My feet still are pretty swollen and hurt like hell and so do my thighs, it certainly didn't help with the undignified crawl up two flights of stairs to get home! I probably won't sleep tonight from the amount of pain I'm in but like always I'll survive while everyone sleeps, praying that eventually sleep will take me.
I had a brilliant day with my family and my mum and step-dad (and also my little sister) did an amazing job with the egg hunt and the BBQ. The effort made was amazing and despite the pain (and the spilling of the drink) I had a wonderful time but I can't help on days like this, wishing that I was "normal".
So although the mishaps I wanted to say a huge thank you to my mum and step-dad for such a lovely and wonderful Easter.
Hey everyone,
Sorry haven't blogged for awhile, my dongle broke and I've been waiting for my broadband to be fitted. I've also not been feeling very well, I've been really drained by this disease and have had very little energy. I haven't really had the energy to lift my head of the pillow let alone write a blog post! Its been quite a frustrating time as I go from fatigue to insomnia but either way I'm constantly tired.
So really what I wanted to say was forgive me for not blogging more often and I promise a blog post will be coming your way soon! xxx
Hey everyone,
I just want to say before we start that I'm sorry I haven't written that much as I've been feeling really under the weather.
Recently I've joined support groups on Facebook for Intracranial Hypertension and I've noticed that most of the women who are diagnosed with IH have been told its due to their weight. I haven't personally had this said to me as in my case (and I don't want to offend) I wasn't overweight when I became ill, I became overweight by being ill.
I know that a lot of neurologist believe IH is due to being overweight although there is no definitive cause. Due to the fact there isn't a lot of research done on causes or affective treatment for IH no-one really knows. Although there is no deviate cause many women find themselves fighting a losing battle trying to convince their neurologist its nothing to do with weight.
I know a few women who have been told that if they lose weight they will GET better, false. Losing weight will not cure you of IH as, as it stands there is no cure for IH. A few women have been told that if they lose weight they will FEEL better, again this is false. Because IH is an unpredictable disease there is no way of determine whether or not someone will feel "better" by losing weight.
If a women with IH wants to lose weight it should be for their own self esteem not because a neurologist or doctor tells them to, to "make them better". I know it makes the women who go through it as well as myself angry that their having to defend themselves. A women I know had an interview with ITV about IH titled "lose 2 stone to save your eye sight". The lady wanted to make it clear that rather then getting better and saving her eye sight losing 2 stone in 2 weeks did nothing but make the situation worse and yet all ITV really centred on was the fact its "caused" by being overweight.
In the medical system its hard to fight against doctors and consultants who don't listen to you without this notion that its all caused down to weight or will be made better by losing weight. Although I agree weight is a common factor as well as being of child bearing age the relation between these things and IH are not known and there are a lot of over factors that can cause it and people who aren't overweight or of child bearing age are not ruled out. Also many women suffer for years with IH before getting treatment which can contribute to them gaining weight plus there are other disease which seem to go hand in hand with IH like under active thyroid and fibromyalgia.
In my view to much is still unknown about IH that it can't be fully determined what if any weight plays in the whole cause of IH and if weight is an issue for you, think more on losing weight for your own well being then on hoping its going to "cure" you.
Talking about weight and IH a few women have got together to lose lbs for pounds in a bid to raise awareness and funding for IHUK. Please check them out and donate as much as possible! Thank you.
http://www.iihuk-pounds4lbschallenge.moonfruit.com/#
Also for any information about IH you can find here:
http://www.ihrfoundation.org/
