Open Letter

It started years ago when i was health i was out going and loved life to the full. I was a foul because i let you i though the grass was greener on the other side without you. I have been thinking about you all these years and miss you and think i wonder if things had been different what we would be doing now.

Now i have RA and i realise that we have grown in to different people and i still miss you but i know its hard for people to understand RA and to live with the fustrations of RA even as a friend/partner it is hard to cope with seeing the other person in constant pain. Seeing them unable to do the things they love it hurts both people. Love some times comes through some times you stsy friends what ever happens no u'll always have a place in my heart.

If you read this understand i needed to get it out my system, if your a friend reading it and wondering who im talking about, dont worry.

Gift search!

I slept really well last night, which was such a relief as it seems agies since i have slept well. I was in bed early around 12-12.30 again! I slept straight through until 10am when i though hold on why hasn't my carer been as i have a 10am call but in the week it is often 9.30am! So i rang the out of hours number and got told they would see when they would arrive. My carer arrived at 10.40 and she said my call hadnt been put on until 10.30am but why when i have appointments and things to do at the weekend would they put a later call on, when i was exact as to the time that was needed.

Anyway then my brother rang and saidf he was going to be down shortly. So me and my brother went into town in search of a Hot Air Balloon experience but we didn't find one which is kind of mad as normally they are every were! So we had to go Redditch with my dad. Off we went my hips were starting to hurt and i was feeling uncomfortable we spent about 1 hour 45 minutes walking round we did not find one, then we got two cards and some chocs and a DVD.

We came home and found an experience online, can not wait til dad see's the gift on Monday. I had some food later when dad was here. My body is feeling tired tonight and my shoulder is hurting to. I'm not enjoying fireworks night as my dog is giving me a splitting headach with the none stop barking as he's scared of the fireworks. It is also cold so my heating is on tonight as the cold makes my joints become stiff.

I am hoping i'll feel ok on monday for my dads 70th birthday, i do have a two hour physio session first.

x

strange old day

Well today has been the most bizzar day yet. I wake up really early because i had such a good sleep last night! I wasnt in pain when i woke up but i was rather stiff on my shoulders. I was in the living room watching the TV before my carer had even arrived this morning. She did not have a lot to do apart from my hot water bottle and a drink!

So overall my day was ok, until i found out my dads licence had been returned again they want my evidence about who he is but he's already sent that much proof you can not really denie it is him! Before i go into this i better tell you about the rest of my day!

So i have been transfering files from my old computer to my new one ive moved over 2,000 pictures but i am having a break now as i am shattered! Ive caught up on some TV, had man v dog race for the post again and yeah you guessed it ben beat me again! This time he wrecked my magazine that i was waiting for, my monthly cooking magazine!

Then my carer came so i had my bath and a good catch up as have not seen her for a week and i miss our chats!

My dad came did my tea, walked ben, was all very civilised! Then the bomb shell hiw at around 7pm UK time!

My dad can not drive after Sunday evening 11.59pm to be exact because his licences has expired now i would not mind but he has sent all the identification that has been required and still they want more, i mean how can you lie your driving licences, current picture which has been signed, birth certificate, passport! So my dad now can not drive which means, how am i going to feed my dog, walk my dog, get to my appointments get more drink and get more food? I am in real trouble because i am totally house bound now and i have an appointment on Monday for some ground physio i've been on the waiting list around 6 weeks so i can afford not to go to the appointment. More importantly what am i going to do about eating?

I have some issues with food you see and i will not trust people to cook my food unless i know them and the only people who can do my food are my dad and brother and they are now over 3 miles away! Not sure what i am going to do about all this to be honest! I am really stressed out!

Anyway im going to finish there x

up and down!

Had the same person in again last night which is nice i like having the same people in it settles me and i sleep better on top of that the dog is more settled, plus you can have a conversation with people and really get to know them which is nice.

I woke up this morning i was so shattered as i hadnt slept well at all. I had my support worker in which was nice as had a good chat worked though things that were playing on my mind. Then a huge thunder storm started and my road was flooded on top of that my ramp looked more like a river than a ramp. Which meant my support worker had to wait for a lift as it was really bad outside. Then i fell asleep and woke up when my dad turned up, deary me.

I had my food which was nice but i was tired, so after my dad left i just sat and watched some tv. My couisin came later for me to have my reiki, i arrived back and the carer was sat outside but it was only 9.20pm so she was running early. I feel great after reiki pain is low tonight it always is after ive had my reiki treatment its really good for me!

Over all today ive tried to relax and catch up with some sleep as i hardly slept last night. Hopefully tomorrow will be a good day.

xx

Lonely day

I could sleep last night because of the pain it was just awful. My shoulders were the worse and my good knee really got me kept getting a niggling pain so i did not sleep well at all.

I woke up to my carer here i wasnt exactly asleep i was stroking my cat but i just could not get out of bed because my shoulders could not have any pressure put on them as they were painful, i know it will get easier when this flare looses its power.

I sat waiting for my friend to arrive, but i did not think to check for my messages on facebook and ended up falling asleep! When i woke up i saw the message about what number do i live at now, i felt awful, but my body just fell asleep i could not have done anything.

Then i had to make several calls things are starting to get sorted now it is such a relief. I ran out of drink earlier and my dad wasnt due for about 3 hours and i couldnt lift a bottle of lemonade to get me a drink. I was very upset. So i just had to get on with it. Dad came i had my tea, my brother made me a pie for the next few days, it tastes good i miss being able to cook it myself.

My dad went and i fell asleep, lucky i woke up just in time for the Manchester United game i normally sleep through them. See football gives me such a buzz because no matter if you can not walk, you are fully involved in the game because its about passion and i have a lot of passion for football.

I have a few things on tomorrow but ill blog about that tomorrow. Its been a very lonely day ive only seen my morning carer and my dad today, it isnt fair i want to see more people than just that i am only 26 years old yet im housebound and it is really getting me down at the moment.

Just waiting for my evening carer now, thank goodness i have my online friends to chat to and of course my ever loyal dog Ben.

Part One

when you have your ability to walk, do what ever you want, it may be go to a shopping centre it maybe walk your dog it seems fine. The you have daily living like opening bottles, walking to the toilet, cutting food and even cooking from sociable to do your own meals. I had it all in 2008 just like everyone else. Then one day i woke up in the most aganising pain it was just awful, i cried, the worse was that i never realised what it would take from me. If i would have known then what i know now, i would have droped everything and gone to all the places i have ever wanted to, seen all the things i want to. Because now simple i can not go any were with out some one else and it sounds ridiculas but it is very fustrating. Id love to visit Paris but i can not go because i can not go on own, i will never see the things i have dreamt of seeing.

I had a major flare in my foot and it kind of started the tumble down because i thought i had broken my foot i had never felt pain like this in my life it was awful. I could not put my foot on the floor i could not put a sock on a trainer on because of the pain i was in. I could not even put the quilt over my feet.

But then the sudden lose of being able to dress, not being able to put your socks on loosing your ability to get your top on, imagine just for one minute you wake up and you can not get your socks on, you can not get your fav jumper on because your arms are to pain, its tough.

I never use to think of these things but its daily life.

I lost some thing when i got rheumatoid and it was vicky, i've grieved for my old life, i have tried so hard to just move forward to rebuilt my life and it is so hard. To accept help from stranger, to have you younger brother have to cook your meals at 26 years old.

I can not write any more because im crying but i will continue this in another blog.

November 1st

Well last night i hit the fatigue patch, i was not expecting that. I became sleepy the next think i knew i was in bed before 1am which is most unusual for me. I must have gone out like a light because i woke up at around 6am for a drink then i was asleep again! I didnt even hear my dad come in or go out, he said he walked the dog i had not even realised! The next thing i knew the carer was going "vicky." I felt awful this morning when i got up, my back was hurting i am sure it is the way i'm sleeping and then my shoulders felt awful.

I got myself up with a bit of huffing and puffing! Went into bedroom i really did not want to get dressed today but i had to because my brother was meant to be coming over to go order my dads 70th birthday cake. So i stuggled with my carer to get my top on. I was finally ready then the carer gave me my laptop charger and it was broken, its been on it's way for a while now.

My brother was running late so i was sat here waiting for agies in the end i rang him and he was still in bed! So i rang the NIA to see if they had any wheelchair seats for Disney On Ice with my couisin and her little girl but they didnt have any, i was disappointed. Oh well ive to look into a childrens event in april see if we can get tickets for that instead, forward planning, i do that a lot. Then my brother arrived, we went into town to order my dads cake, we had a square cake with a hot air balloon on it with "happy 70th dad" it will look really good.

Due to my laptop being broken we then went to worcester i couldnt drive it was way to painful. So dad drove and we looked for a laptop charger but they did not have any in the end i decided it was best to buy a new one,. But i didnt like any in that shop so we went to tesco and i was lucky enough to get one that was light weight and the keys are a lot easier for me to touch so it means less stress on the joints. You have to really think about things from clothes to technology if you can actually use them, you have to think will i be able to lift it when im on my own, on camera's you have to look at how they operate as some have those little knobs at the top were you have to turn them to get various pieces of the camera.

I came home and got some tea i couldnt go to college because im physically exhausted, my dear body is full of fatigue she says yawning! My good knee is hurting me to and my shoulders are still hurting. Ive had to take painkillers today because of the pain. Im going to chill out and watch some football, im listen to my music but i can not!

Live life to the full, dont have regreats, enjoy every moment.