Monday

Oh what a day! This morning i got woken up at 9.45am i had only been asleep about 20 mins! I wasnt to happy at all! My carer and i did the normal, get up, get dressed but my shoulder joints were hurting to day so i didnt manage to get my pj top off which was a little disappointing as id have liked to with the appointments i had, but never mind it comes with being ill i guess. We had a chat after i was read for my day, we talked about general stuff, its always nice to be able to have a chat with people.

Then i have to admit i fell asleep my body must have been fighting its self hard today. Had about an hour. Then my first appointment of the day came, were we talked about making things easier for me and what other things i could get involved in to keep me meeting new people because its quite hard some times being housebound unless you have a faithful friend or support worker to take me out, but i have my TV and i can update my blog when i have a few moments to my self.

Then my second appointment arrived, my occupational theropist, she recently managed to get me two ramps to my property which enables me to go out espically when i get my outdoor wheelchair, the world will be again my oyster! Today we looked at my kitchen we decided that we are going to get one of the work surfaces lowered for me to make things a little bit easier and who no's maybe this will be the start of me being able to cook again, i'll keep trying! We also talked about how my shoulders were being affected because of having the manual wheelchair and having to scoot myself round with my good leg and shoulders were of course being used to help me turn.

After she left i rang my social worker for a chat as i felt i should keep her updated with what was going on. We are going to have a big meeting soon with all my support people to try and make sure i am getting all the support i need as well as going to the doctors next week!

I then went shopping with my dad for some food, we put a basket on my lap as i didnt need much! Me and my dad shouldnt go shopping together as between me and you he can not hear so you have to shout then he says why you shouting! I love him very much he's my dad but it is so fustrating some times!

Then i came home had some food, had some bagels today for a change not very "heart" healthy but as i tell my cardiologist i can not do much else let me eat what i like! It is so yummy!

Then i had my breavement counciling this evening. We talked about a lot of different things. You see loosing my mum hit me very hard she was my best friend, my fountain of knowledge my comfort when i was sick to! When i lost my mum shortly after i lost "able vicky" i became some one with "Rheumatoid" its like a grief process but it gets easier.

I will have to tell you more about the grief process from "able vicky" to "rheumatoid vicky" its been a tough ride i wont lie. Id also like to share with you my grief of loosing my mum back in August 2008 along with a lot of other stuff.

But no this I am proud to be sharing my story to every one who is reading this. It gives me inner strength. Thank you everyone, i really mean it.

Oh and lastly HAPPY HALLOWEEN to all my readers x

My Heart and me

Before my new entry i want to give a massive THANK YOU to all of you for reading you are all amazing thank you!

Tonights the night when i tell you about my other health problem. Some of you may know about it others wont. Well i was born with a heart condition called Techtrology Of Fallots which is a condition that means i was born with a hole in my heart, along with a leaky valve which is still leaking and i may need open heart surgery in the future, im a bit scared about this prospect but i know it will only be done when it needs to be done! I also have narrowing heart artries.

When i was a little girl i had open heart surgery, my mum must have been so scared because its a major operation to have and i wasnt even 5 years old. When i was 3 i was very sick and they thought they may loose me but no i fort back, im a fighter through and through.

I pulled throught my heart sugery, i started school in 1990 like the rest of my age group, i meet a lot of people and some i still have contact with via the internet which is lovely. I have 1 large scare that i say is my badge of honour as it is part of me.

Now im 26 i still have year cardiology appointments with my hospital down in London UK at The Heart Hospital. Were i have a fantastic team. I am very lucky because other than a heart cathater when i was younger and my open heart surgery ive never been required to have any further treatment, which i have to say i think is an achievement!

All in all my heart doesnt affect me overly because now i have rheumatoid it does in a sence because i have to be careful as to what medication i can like steroid which many patients take. Also because of the damage espically in my feet it means that my circulation isnt as good as it could be somtimes i go blue on my toes and my fingers but its just because of the circulation, i try not to panic the first time it happened i was like oh no but now i take a deep breath and relax.

So thats me and my heart

xx

Insomnia and me

I thought i would put an entry about suffering insomnia. I am not sure why people with rheumatoid suffer from it but believe me they do!

For me its been one of the worst things to over come bar the fatigue but that's for a different time. Before i got Rheumatoid i had never suffered from insomnia! Now it is a daily stuggle. When my mates start to drop off at around 11pm to go to bed im still wide awake. I sit here and think why am i not asleep! But even if i go to bed i just lye there and get irrated so i may as well sit up and watch TV catch up with emails from friends and family and talking to other rheumatoid suffers along with making new insomnia friends who those who are working shifts!

It can be rather lonely at 4am but i have my dog whom i love. You no the worst thing is i know i have to be up at 9.30am daily as i have several appointments each day, so i get very little sleep. Even when i do go to sleep most nights it isn't even comfortable sleep, im tossing and turning most of the evening. Ive gone with no sleep for a few days. I can not go to bed until i am starting to fall asleep or i wont sleep at all.

I look forward to a night when i go to bed at a normal time and sleep. Oh yes i forgot that does happen when im fatigued and then i can sleep 10 hours plus a day. Its very strange. You know the worst is when i have insomnia and fatigue all in one go. Im awake all night then my body is just exhausted from fighting and then i sleep most of the day then i can not sleep at night again!

I look forward to a night/day of normality!

Blog soon

Sundayy

Well today i get a lye in! Well til 10.30am when dad comes for sunday roast! I got up. But my shoulders have been hurting today so i wasn't able to get my top off so off to dads with my Pj top on. If i was well enough i wouldnt do this but needs must. Anyway got to my dads and my brother was still in bed so we couldnt get in via the back door! So my dad went round the front got in and came round i think he must have shouted at my brother to as he wasnt long before he came down! We chatted about football and the fact my brother was not feeling well.

Then me and my brother went and talked about my dad's 70th Birthday! We have decided on a Hot Air Ballon cake, how cool will that be? I'd have got him a manchester United cake as hes a fan but my brother got one of those for his 18th! Plus my dad wants a hot air ballon ride for his 70th, i know how dareing is my dad!

We had sunday lunch was yummy as always! My brother stole the salt though and so i had none on my roasts criminal! Although im sure my Cardiologist would be proud! Anyway i had cuddles with my dads dogs Lucky and Mel. They are so cute!

Then i came home, gave ben his chicken parcel my dad does for him every week, bless him! I then, text somthing that i should not have done. I then went to sleep, yay!

Woke up to watch some football, end of cardiff v leeds 1-1 good for blues that result we are 8th in the championship and have games in hand so it looks really good for us! Later i watched spurs v QPR 3-1 well done suprs!

Oh and dad came over with chocolate i just fancied some white chocolate, graving it all day.

I'm just going to chill out the rest of the evening til they come to do my anti-inflam gel.

I am hoping to get some sleep tonight as ive been suffering really badly with insomnia its been quite awful. See rheumatoid is a bit of a pain because it takes away your abaility to sleep at night at times but then other times you just can not stop sleeping. I normally get hit with both at the same time, i crnt sleep at night for anything (insomnia) then i sleep when the sun comes up (fatigue) its a bouncy ride having Rheumatoid.

Lifes a rollercoaster but you have to love it.

Blog soon

Relationships

When i got rheumatoid i was in a relationship i'd been with this person for 3 years when it started. The person saw me going from a busy women, i never stopped, studying, walking the dogs, seeing friends, seeing family, shopping and of course driving! I had just lost my mum so that hit us both hard as my mum always accepted the person i was with, with open arms as it was who i was with. Then the Rheumatoid started one day i woke up and i couldnt even get my clothes up, so my ex had to help me dress before going to see the doctors. It got worse when one day i was stuck up stairs with my dog and my big cat toby he's a beauty. In the end we had to move because i simply could not live in a house any more. The stress mouted as i could do less and less in the end it was just to much and dmy ex walked away, i cried and i cried because that was it the first time my health had done some thing like this.

Then i got with some one else. It was ok when i was walking but then i had a major flare up and the condition took my knee i lost my mobility and no amount of trying and effort is going to bring it back because believe me i have tried i never give up. The person could not cope.

I think you really have to love some with rheumatoid because if you dont it wont work and you'll hurt the person with rheumatoid so much more than you can imagine.

I think im going to close my heart now because i dont want to be hurt again and the one person in the world that ive loved and lost will be a friend for ever but i know that is all because rheumatoid is cruel.

Love your loved ones keep them close and remeber if you ever think why am i here think very hard before throwing it away because one day you may well regreat that day.

Friends

Before i had Rheumatoid i had a lot of friends that i'd have called "real friends" its been three years now and i havn't got many "real" friends left. Dont get me wrong i have a lot of acquaintance's whom im glad i have. But a girl needs real friends.

The problem is people just dont understand how to take RA they dont no how to deal with it. Its hard seeing your friend go from "normal" running around like a headless chicken to some one who is constantly fustrated in a wheelchair. See thats the thing, when you go in a wheelchair you have to rely on friends, family to push you about and some people just can not manage with it. I can understand it, im only 6 stone and 5 ft and i couldnt manage to push a wheelchair with the best will in the world, but i know i would stay friends with the person just i'd feel guilty that i can not help them, maybe its guilt why i have lost friends.

I am lucky i have some dear friends that have stayed close and i hope they are always there, although i know as we grow older and we start establishing our lifes that things will change because they will all have there relationships, babies, jobs and a social life. Were as i'll just be stuck here in this place just me and the dog, thats ok as he is very loyal but he wont talk to you, go shopping with you laugh with you cry with you when things dont go the way you want them to.

My main message is that if you ever find a friend is long term sick give them a hug and tell them it will be ok but never say you'll always be there unless you really mean it because walking away hurts them more than it hurts you.

friends are your choosen family, keep them close, love them be there for them. A best mate is a special person.

Lots of hugs

Tesco

So it's that time of year when you start looking at christmas gifts! Well i like to buy my couisins girls a gift that they will like so i always ask my couisin. I mean whats the point in buying a gift for kids if you're not 100% sure they will like it?

So my couisin suggested some thing for the eldest. I was going to order it off line but i like to get out when it is possible. So my couisin and i went off to tesco to get the gift! There was only one left so we got it, we was looking and saw some thing for the youngest as well. So both gifts sorted in October yes i was rather pleased with myself. But they were quite large boxes so we had to get a trolly!

My couisin had never taken me out before in the wheelchair. So when she first arrived at mine i was all ready to go. We got to the car and i had to tell her how to dismantle the wheelchair, its the feet first or paddles! Then you pull the cushion off then pull it up from the centre and its folding up, pull two levers at the back and the handle's are flat well we couldnt get one handle down, so one handle up and one down off we went to tesco! My couisin put the wheelchair back together!

So we have these two boxes which were quite large! My couisin when to get one of those wheelchair trollys that attach on, now ive never used them before! So my couisin places the boxes in and i hold on as we couldnt attach it! Well the trolly was going one way we was going another, i couldnt see a thing my couisin couldnt either! We carried on looking round the shop as its a massive Tesco extra you see. We got a talking doll to go with the youngest's gift. So i'd spent the same on them both! Then we got a few other bits!

A nice Tesco worker said oh we can attach the trolly for you (i think we must have looked funny!) But they couldnt attach it either except for one side, so now we are attached me and the trolly! The funny thing is it made it a lot worse! Now my wheelchair wheel and the trolly wheel were getting traped together so we were coming to a stop rather quickly! We went to grab the last thing some dog mixer now im not sure if you know this but the wheelchair trollys are not very large espically with 2 large boxes in them! So my couisin improvised and put a bag of dog mixer on top of one of the boxes, yeah you guessed it i looked a little nervie! I was sitting right back while holding on to the trolly and hoping my wheels didn't clash coz i couldnt exactly get away if the mixer fell now could i!!!

So we made it out of Tesco, no falling mixer bags on me! Everything in the car, including me and the wheelchair!

It was a lovely couple of hours to just spend with my couisin its one thing i miss being able to go shopping with her and have a good natter.

If you're reading this i love you couisin, you know who you are!

Oh and yes neither of us could see a thing, a good fun and a few laughs!

Lots of love

Blog soon

Saturday!

Well i'll start from last night! I had a nice carer in last night she got everything done for me and i felt comfortable, she asked if she could come again and i said yes! Went to bed quite early was asleep by i think 1.30ish and slept right thought.

My dad said he came in this morning around 8.15 and i didnt even realise he'd been in aparently i spoke to him! Ive always talked in my sleep! Was woken up at about 9.30am by my normal morning carer havnt seen her for the past week so it was nice to see her! Managed to get my hoodie on this morning, really pleased because it is cold outside! Had a little chat, ben was pleased to see her to! Then i text my brother because id slept through dad coming in i hadnt told him i had a beauty appointment at 10.30! So dad came back and off i went.

Well i was there for two hours! I had a beauty treatment called Reiki im not sure how much you know about it. But basically the person undertaking the treatment puts their hands on points on your body that they are guided to, unsuprisingly mine are of course my joints. Im not sure how it works but after wards although tired it feels so good, my joints have some natural relief. I can honestly say that Reiki really helps me it is so calming and relaxing my joints just feel great afterwards. Since i've been having it the swelling in my joints have gone down which is always a bonus. I then had a pedicure and wore heated boots and they felt so good on my feet was so lovely!

I saw my couisins girls which is always lovely. The eldest took a ride in the wheelchair on my lap today! I think she had fun she waved at me when i was leaving! I do like seeing my couisin, aunty, uncle and the girls, makes me smile! (i must tell you about my visit to tesco in another blog with my couisin a few days a go!)

I came home to watch Arsenal beat Chelsea (5-3 arsenal) well done lads! I do enjoy seeing a good game, then i heard that Manchester United Beat Everton 1-0 goal from Hernandez well done that lad! I then put my heating on and i must have fallen asleep next thing i know my dads here for tea! I must have been tired! I saw that Birmingham City drew with Brighton keep going lads, your fab! I had my tea its so fustrating dad didnt want to cook today so i had to have take out but i didnt fancy it plus i had just woke up so i wasn't in the best of moods! Eating fustrates me because i crn't even cut my own food and dad has to so i feel useless but at least i'm eating!

Im currently Watching the West Brom v Liverpool game its not going great as West Brom are loosing. Im still feeling quite tired i may have an early night.

I am going to sit and watch x-factor tonight and talk to my friends. On that note my couisin is getting married today, i hope you have a fantastic day, if you are reading this!

Cooking

You no not many of you will no this, but some of you will. I went to catering college when i was a youngster the rip old age of 16! I enjoyed it ive always had a passion for cooking, i just love feeling the ingrediance. I love seeing a loaf of bread rise the smell of home made bread is just special!

Anyway when i got RA it got took away from me i could no longer do my fav past time, cook a batch of cupcakes, cook a roast. It actually made me cry at the start. Now i take comfort from reading about others adventures in the kitchen, seeing my brother cook, and no i havnt got to do the washing up!

I still read my monthly magazines, Good food mags and baked and delic i still love reading recipes and thinking how id execute them. I no longer get upset that i can not do it myself but i no that i can still pass on my wisdom to others. One day ill make another cake not sure how yet but i will why because i WANT TO!

Never give up :)

Fridayyyyy

What a night i had! It was so unsettled i went to bed early like 1am to try and get some sleep as i had hydrotheropy well it did not work, i tossed and i turned all night long. Eventually i must have dosed off cuz i woke up to my carer going "vicky" to which i went urrrrrr!

I woke up and instantly thought oh no pain, well all im going to say is i was very stiff and very painful joints. I eventually i made it so i got out of bed with my carer helping me, 1 2 3 and bounce that upper body cuz no way on earth was my shoulders going to take any weight this morning all 6 stone, you've got to be kidding right?! I then made it to the bathroom and my carer helped me get dressed there wasnt many choices this morning it was a stretchy jumper or a tshirt well as it was cold i went for the jumper! So i was ready!

Opperation ben took place.. Now you see i have this little dog his name is ben, he's a Jack Russell and hes such ace but he hates being left, shut a door and he'll bark! Anyway we got out the door watching ben in the window give big eyes as if to say dont leave me mummy i love you!

So in the car, was it cold this morning brr! I meet my carers friend who's also a carer she seems really nice. So we are off, bit of music on, fog on the motorway just a typical english morning! We arrive at the hospital and you see there is only 10 disabled spaces conjoined to a department were yeah you guessed it, most people have a disabled badge so yes we waited and waited!

Today we got lucky and some one came out when there wasn't anyone waiting but normally we have to fight for these places, clutches at dawn unless you have an automatic of course then its accelerators at dawn! Anyway we park get the wheelchair up then we are off!

I get into the hospital, costume on as ever a mission just coz im stiff in the mornings you see. I go on a new white chair and i fly in the air .. its a swimming bath hoist but its flying right? So im in the water and omg its so hot today its fab! I crnt do much today coz my joints are hurting and physio doesnt want to push them as i flare really easily. Well thats it she says this is your last session and oh what a suprise no follow up physio on "ground level" but she will write to my consultant saying im having a hard time!

Off i go flying again, realli high this time as a women is right by the area woop we are up up and away! Finally come back down to earth! In the shower oh it is so cold my toes are going blue, poor little things! Hot sheet given to me today, thanks NHS! Then i'm off to get dressed after a few near falls and a women climbing over the bed coz shes stuck behind the white chair, we are ready to go!

Today im feeling a bit crap so i grab a drink which i can not open, why do we have lids they are stupid! Carer undoes it for me hurray fluid! Back in the car off to the supermarket as i needed some bits, oh yeah never a disabled bay when you need it, lucky we didnt wait to long. I have a pet hate of people who park in disabled space when they dont need them have u got a badge no but im old, park in a normal bay! Yeah so off home, ben is lying upside down in the window dam he is cute! We get all my stuff and down my ramp it was only finished last week but its fab no more scary step!

In we get and i have my bath while my carer does a few bits for me, you no when you moan about hoovering, i wish i could but thats just another thing RA took away from me doing housework! My carer changes my bed for me! Then i have a bit of lunch as im hungry from hydro then we have a chat, get some drinks, then my carer leaves.

I find out my normal carer is off next wednesday so i cancel my call as its quite personal having a bath so its really important to feel as if you can trust that person. Because although im ok once in the bath, getting out is always fun, one leg at a time, standing up and then hop and fall down the toilet HAHA.

Do you realise how hard socks are to put on? Oh dear i just crnt do them bloody things i mean why make such things! Thankfully my carer helps me with them! Anyway im on my own now general issues with the bathroom, oh and the kitchen that fun go in 360 to get out hoping its not slippy cuz if it is your going to go sideways!

I fall asleep then i hear the dog getting mad, wake up to newspaper every were, this dog of mine has serious issues! I realise the post man hasnt come yet i start getting in my wheelchair then i see the post man, its man v dog in the race for the post, lets say Mr Ben is a lot quicker than me ha! So shredded post, i think hes trying to help as the letters always end up in the living room! Lucky it wasnt anything important! Then i go back to bed cuz i am shattered i sleep straight through til my dad arrives!

I have my tea, then get comfy on sofa with the laptop and my tunes! Its follow friday on twitter so i gave my mentions and got some back to, thanks tweet family! On that note im going to shamfully say if your not on twitter follow me @vicky_bes

Tonight im not sure who's coming to help me "gel up" well my anti-inflam gels so we will see, last night we had record timing here for about 15mins!! Wonder who and how long they will be here tonight .. that is the question

Signing off now, blog soon, keep smiling all x

The bathroom and me

My bathroom isnt the biggest in the world infact its pretty small and with my big ass wheelchair its not that easy to move about. But every time i scoot to the bathroom i get ready for a fight! There is a small lip on floor and omg it is a right thing to get over wheels have to be in the right place, if they are facing outwards i wont get in. Imagine doing the long jump at school its like that a 1 2 3 and push and you over the thresh hold! Many times ive become abit stuck! My reversing is quite a treat now as i crnt turn around in the bathroom you see, so i have to reverse out gotta get the wheels in the right place again! I often have a giggle to myself, thinking if people could see me they would laugh because i do, so its ok.

Life in a wheelchair does make me laugh somtimes the simple things are often the most challenging and funny!

Day to day Kinda stuff

Evening!

Well Rheumatoid is being an total pain at the moment. I am suffering from really bad insomnia its awful i didnt get any sleep til about 4am then i was up at 9.30. During my sleep it was unsettled as i kept moving my arm gets stuck its a pain and really hurts if u want to turn over etc.

To get to bed its quite a mission, First i get into my cheer with a hop, then i pull myself with my good foot along phone in hand, place it by the tv switch my dvd on, then pull myself the loo, get the wheelchair close enough to get on but far enough that i can twist on one foot! Then back in the living room switch the tv off, then scoot back in the bedroom, park the wheelchair at the end of the bed and hop sidewards on to the bed, charge the mobile, have a drink and im off for some zz lol!

Morning comes, im so stiff it takes me a good hour to get moving, my carer arrives to help me into wheelchair, then off to bedroom for wash and help get dressed i was so bad today i had to keep my pj top on, i ust wasnt up to getting it off. Then into living room, they leave me 2 drinks for the day. I sit watching abit of TV for half hour, then my appointments start, by 4.30 everyone has gone and dads here to start my tea.

After food dad tops up my drinks then i sit on my sofa and join my friends on facebook and twitter stick my tunes on. Ive still not sent that text that i need to its so hard.

Today ive had to take my max painkillers coz im in pain and my body hasnt loosened up, i hate this cold weather.

I hope i can get some sleep tonight, i need sleep. I'm off to hydro in the morning, my fav carer comes to help me to, its my last session because ive had my maxium session which i feel is unfair as it really helps me.

On a lighte note i neary fell out the wheelchair twice today and ben had a verbal shout at a builder. Oh and im having my kitchen assessed on Monday to see if it can be altered for a wheelchair!

Accepted a wheelchair

At the start of 2011 i was walking all be it very slow and very painful, i was walking. Then i just couldnt cope any more. I walked into tesco gripping on to my ex and my brother for dear life and got asked "do you want a wheelchair" i accepted it was deverstating. The i went to vote in the election and a little old women said do you want to use my wheelchair dear? I declined.

I realised shortly after that i had to buy a wheelchair, i had mixed emotions. I was loosing my mobility my ability to do silly thing like walk to the loo, walk the dog, play in the park with my couisin and her girls.

I felt as if my life was over, i felt so low, i wont lie there have been some very tough times, ive cried for hours, why me? why now?

I have my wheelchair now ive had it 5 months best thing ive ever done i can go shopping, take part in sports see my friends, go to concert, enjoy a game of football, its allowed some of my life back different but its back.

Special thanks at this point to wembley brillent wheelchair facilities to manchester united i can not praise you enough. But most of all to everyone that has pushed me, nearly tiped me out, hills, beaches and everything in between!

Time for a change

So i spend my days at appointments i have alot, i have a really supportive network of people who help me with general stuff and also activities as well, it means a lot to have the help i get i wont say who or which organisation because thats not right but i thank you, if you ever read this blog.

I can also not forget my hospital team they rock even if some times i annoy them and they annoy me! Also my care agency that help me espically one person who has seen me in tears seen me unable to get out of bed seen me full of the joys, its been a rollercoaster but thank you for helping me get back up dust myself down!

My friends and my family you pull me through when times get tough as ever.

I also have a lot of support from the online rheumatoid community on facebook that spreads worldwide, its good to know your not the only person in the world suffering. But at this point i have to give a massive thank you to twitter as i have meet some really supportive people who id call aquantences and they just see me as vicky nothing more nothing less, no RA just vicky.

To my football buddies online and offline for always having some banter ready .. manchester united and birmingham city are my colours!

Today i decided i have to let go of the old vicky because she doesnt exist any more a new vicky has emerged with RA that has new outlook on life.

This is my story ...

"good bye vicky hello VICKY!"

Background

Hello!

My name is Vicky. I am 26 years old. I got a condition called Rheumatoid Arthritis at the age of 23 after i sadly lost my mother. She was my world, my everything. At first my doctors thought it was grief which is perfectly understandable in the circumstances. Eventually i found out i had Rheumatoid.

My condition got a lot worse over the past 3 years, its been a long and painful road. When it all started i was in a relationship but that came to an end why simply my RA was to much to handle, i dont no how i would cope.

Now im in a wheelchair, i started seeing some one else but they couldnt manage either.

Life is hard and painful But thats not why ive started blogging.

Time for a change