Woooopse I forgot about this...

So I pretty much forgot about this.
So an update, quick warning, if you want a cheery read then go no further.
I last updated this after my MRI scan this time last week!
Since then I have hardly slept, I seem to be awake for hours on end, days on end even. I cat nap some days for a few hours but its no enough. Its strange because I don't feel tired. I am wide awake and the only thing bothering me is the fact I am still awake.
I have been put on more painkillers, diclofenic sodium. Just another tablet to my massive list of thing I have to remember to take.
My short term memory has got worse, I told Richard something, and about 2 mins later I repeated it and genuinely had no clue I had said it.
My motor skills have got loads worse, I keep over reaching for things, knocking things off tables. Its quite embarrassing.
But over all I am doing okay. I just am getting annoyed at the pace of things.
I have 2 eye appointments coming up, I also need an operation on my eyes, it never rains! I also have an appointment for an ultra sound on my hand. And no appointment for my brain!
So its 2am and I am still awake. My neck is hurting and I am bloody bored!

MRI

Had my MRI scan at Southampton General hospital at 2pm. It was fine except they had to stop the scan twice as my pulse was fluctuating massively.
It gave me a mega headache, lying on my back always causes some discomfort, however 50 mins on my back with my head strapped into a cage was no fun at all!
I have hardly been sleeping again, I have had my pain killers upped again and its not helped.
However only a 3 week wait for my results so fingers crossed it starts moving quickly after that!

Something I found online

I don't look ill...... although I might have a pained expression in my face which may appear to be outwardly grumpy. Take it that I am in pain and I am trying to hide it from you the best I can.

If I am quiet or in a non-talkative mood, don't assume that I am in a bad mood, I am merely trying to come to terms with what I can no longer achieve, or can no longer do all that I want to do, and that it is very frustrating.

On the other hand, I might be exhausted from dealing with the pain and discomfort, or trying my hardest not to fall over with the balance issues that I have.

Do try not to pity me, I can do that very well for myself at times and I do try my hardest not to sink deeper in to it.

Don't compare me to other people with "similar" pain issues, everyone has their own problems, some worse than mine, some not so. Some people have managed to come to terms with it, I might not have yet. Pain is different in all people. Not even two Chiarians have the same symptoms, although we do share a common bond.

I know it could be a lot worse, and I am grateful that it isn't, I really am, but it doesn't make me feel less pain or feel better. In fact sometimes it makes me feel down that there are people that are worse off than me.

Just because I am in pain, doesn't mean that I can do much about it. Paracetamol is not a cure all. Some medications don't work, some have horrible side effects and give me other problems that add to the stress and feeling of unwell.

Don't tell me what I can and cannot do, don't label me as disabled. I want to try and do the things that I used to so, if I can't, then at least I have tried and have ticked off another box. Don't blame me for trying again and again........ I will get the message eventually.

Don't assume that I am angry or upset with you......sometimes we make mistakes and lash out at others. It is merely frustration with myself. I don't mean it, I might have missed the fact that I have upset you. Don't ignore it, tell me so.....but do it nicely please, lets not start an argument.

Don't think that just because I can do something today, that I can do it again straight away, or can do it tomorrow or the day after. My symptoms can change daily, my energy levels and patience can be sapped by the simplest of tasks one day, and appear easy to do the next.

Try and treat me as a "normal" human being, I will respect that and will be very grateful. Try and encourage me to do "normal" as much as possible.

Don't make exceptions for me, I can do that for myself.

Don't be upset if I cancel long standing plans at the last minute - I want to be there, and I am trying to be there but sometimes I can't and don't have the energy or capability on the day. I cannot plan ahead with certainty but I will plan.

Learn about my condition and you will be better armed to either help me when you can, or be aware that sometimes I do need help and haven't asked for it, or that I really don't mean to be rude or ungrateful. I am very grateful, I need friends now more than ever. You will know why I react in the seemingly wrong way sometimes........it will help you stop feeling like you have upset me - You haven't.

Don't be afraid to ask me how I am......I won't always give you bad news, so don't ask expecting it ;) Sometimes I might - so don't ask if you don't want to listen ;)

Help me to see my behaviour through your own eyes - but take a step back first and try and see it through my own.

Don't think that I am just in pain and that's the end of it - there's a reason that the pain is there - it's my bodies way of telling me there's an issue somewhere. That pain leads to other symptoms, and the cause of the pain can also cause other symptoms. Most of which I have no control over.

Don't be afraid of offering me a hug or giving me a little encouragement - we all need that sometimes. If I reciprocate or give you a smile back it means that I appreciate it, If I reply with a grumpy face - I still do appreciate it - very much, there's just something else going on inside my head.

Don't be sad that you cannot take my pain away, don't feel helpless because you cannot help me, what's the point in us both feeling frustrated and useless? Most of the time, I can't do anything about the pain myself.

If I tell you that I cannot do something - I really mean it. If I tell you that I am in pain - don't ask me to empty the dishwasher half an hour later and get upset if I can't. I will try my best you know.

If you ask me to do something in the morning - and it's not done by the time you get home - it isn't because I forgot (well not always) nor is it because I am lazy (although I still can be) it is because I used up all of my energy doing other things. Sometimes all I can manage to do is to sit down and sleep - it doesn't mean that I expect you to do everything for me - it just means that I cannot do as much as you sometimes expect me to and as much as I used to do. I will get around to it - tomorrow I might feel able.

My time table will not always match yours - I can't help it. That's just the way it is.

My life has changed drastically - and not for the better. Please don't expect yours not to change if you are involved in mine.

Know that I still love you, I might shout, I might grumble, I might complain, I might get easily frustrated. I am very grateful of the help and support - just don't make me beg for it.

I have a lot to come to terms with, I have a lot to face up to, it takes time to do so and even longer to accept.

Frustration can bring out the worst in us all - there are two sides to every coin.

I am not always miserable - but by giving me something else to grizzle about isn't necessarily a good thing - there's enough right here to be going on with for now.

13th May

So Finally got my MRI scan date. Its on the 21st May, which is next Friday.
Getting excited to being one step closer to being all fixed up.
Went into work yesterday and found out I am getting half pay for the next 42 days and then nothing. I AM SCREWED!!
They don't want me back until I have been given the all clear from the neurologist, I understand because I can't be put in charge of 30 kids and then faint. However I am still worried about being broke =[

Beyond fed up!

It's currently 4.39am on Wednesday morning. For the past few days my quite bad sleep pattern has gone altogether. I've had about 2 hours sleep in over 48 hours. I just can't fall asleep, I can lie here all night with my eyes tightly shut, however I can't sleep. I feel tired but wired. It's almost like I've drunk too much caffine. My body feels tired but my mind is buzzing.
I've stopped drinking all caffine, the doctor reccomended having a regular intake of caffine as apparently it helps the flow of spinal fluid, and my spinal fluid need all the help it can get. The bit of my brain which has slipped down is acting like a plug and stopping my SF from moving out of my head, which causes pressure in my head, which inturn causes my monster headaches.
So it's a case of weighing up whether I have no sleep or a headache. I've been reducing my caffine for about a week and my pain is rising, and that keeps me awake. I can't win!
Getting short tempered as well. I think it's lack of sleep coupled with me being stressed about having still not had my MRI date.

Anyway, I watched a really good documentary earlier in the night. It's called dear jack. It is about a guy called Andrew McMahon. He is the lead singer and pianist in two awesome bands, Jack's manneqin and something corporate. The film is basically a video diary about his fight with lukaemia. It was good!

Plan for tomorrow=uni essay.

My picture today is Jacob again. This was taken Monday night. I was in the garden and he was blowing kisses at me. He then started leaning on the window which resulted in some comedy photos. This is my favourite one!

Good Luck!

Good luck to Holly.
Holly follows my blog and I follow hers.
She is having her decompression surgery at Southampton Hospital in the morning.
So good luck, you'll be fine and it'll be done before you know it.
Then fingers crossed it will be my turn =D

9th May

Update of last week.
Tuesday: I spent some time with Flo and April! Just hung out and went to Hythe market, it isn't as good as I remember.
Wednesday: I saw Claire. We went to Southampton for lunch. We went to Yo! Sushi and tried lots of new foods. It was really nice, however I know now that I am not very keen on seaweed. We bought some garden furniture and spent a hour and a half just putting together a table. Then we went out to eat again, we went to the haywain for a carvery. Then youth club in the evening.
Thursday: Went out for dinner with Hannah to the bold Forrester, ate too much food and just chatted. Do this at least once every two weeks and its awesome! Voted as well, didn't do any good.
Friday: Spent the day in bed, was feeling unwell and had a rough night. Then went to Claire's house for sausage and chips and to write a letter to the hospital complaining about the lack of MRI scan. Fingers crossed it will have done some good and I will hear soon.
Saturday and Sunday: Spent the two days in bed again, not feeling well. Richard bought a car, he is very excited, bless him. He collects it on Thursday. Watching Lewis now and then going to bed. Hoping to feel better in the morning.

6th may

Not much to update, voted and saw Hannah today!

However I saw the lady who taught me GCSE Latin for a while. Her and I did not get along too well at all. I was always a little bit too hyper for her liking. I bumped into her in the newsagents in hythe. She said hello and asked me what I had been doing since I left school. Her jaw almost hit the floor when I told her I worked in a school. I am sure it was the last thing she expected me to be doing. I was very pleased to be able to suprise her, I might have been pretty bright at school but according to her I "didn't apply myself in the manner needed to become anything more than a shop worker" and she thought I was rude =D


My photo of the day!
Jacob doing what he does best and being a little flirt, he is my brother and still charms me big time. He has a cold at the moment so is doing his best Mr. Grumpy impression

4th May

So not update this for a few days now, probably because there is not too much to say.

Still haven't heard about my MRI scan, considering when I phoned to hurry it they said I had to be seen within six week, they have wasted 3 weeks not telling me when it is.

I have started driving again, not much. My GP said I was oky to start driving when I saw him last wednesday, I just don't feel like I can concertrate for long periods of time. My mind sort of wonders, so I'm not driving for more than about 20 mins at a time. However, when I do drive I suffer for it later on. I think it because my neck is not resting on anything and my eyes are straining. Today I drove about, to lymington twice and I had to go to bed at 4 due to a headache.

All in all my headache pain is more manageable, I wouldn't say it has reduced but I think my mind and body are becoming used to the level of pain in my head. My neck pain however is going up and up. I suffered from a sore neck since going into hospital, however it wasn't that bad. Now it is horrendous. Feels like I've got wiplash or something =[

So what have I been up to since my last update?
I spent Sunday morning at a bootsale, didn't go to buy anything which was good as it was all rubbish.
Bank holiday Monday was spent chilling with my mum and brothers. We spent the afternoon flopping, watching a film. We watched 'the ex' it was oky, had Zac Braff in it who I like in scrubs so I expected this film to be funny, it wasn't really.
Today I met up with April and Flo. We had a nice lunch in a cafe in Hythe, went and looked round the Market and just chilled out. Spent the late afternoon sleeping off a headache. Then flopped on the sofa all evening, playing silly games on my phone with Michael.
Tomorrow is going to be spent with Claire. She and her boyriend were in a car accident yesterday and she is a bit sore, so we are going on a cripples day out. Going to town to pick up a few bits. Then youth club in the evening if I don't tire in Southampton.
Then dinner with Hannah on Thursday evening.
I am guessing the weekend will be spent in bed as I will have worn myself out. One good thing about that is at least I know my headache has come after me having a good time and not just because my brain is rubbish!

Fingers crossed for my MRI letter tomorrow!!

I've decided to add a picture to each blog to brighten it up. So here is the first. The is Ali looking very pleased with himself after getting stuck in Jacobs bath seat! Just a shame he found getting out of it far harder than getting into it!