Friends like mine

I dont often go into stuff like friends but this is a blog dedicated to some of the best friends a girl could wish for you.

I have meet a lot of people of the years, from school days, college days and lots of other places. I have made friends on facebook/ twitter in the recent months.

I am so lucky to have so many friends surrounding me that all care about me and want me to successed they often say they are proud of me and what i have achieved with my blog. I have friends who i have known for years who are always there for me they give me a hug when times get tough they tell me things will be ok.

I recently had my battle with eating again and i had such support from my friends.

My friends have pulled me through some dark days in the past and continue to be there for me in the good times to. I am so PROUD OF YOU all because you have all achieved your dreams you are working so hard. One of my friends graduated with her law degree and i never told her this but when she told me she had got her degree i cried because i was so proud of her achievement. When my friend got her degree in teaching i cried because i am so so proud.

My best friend i am so greatful to her because throught everything i have been through she has been there for me right by my side shes told me its ok, shes told me that she will stahnd by me through everything.

My Rheumatoid friends I AM SO PROUD of you all for fighting this condition each and every single one of you live every day with the same condition as me and you are all hero's in my eyes you are all achiever's for living your lifes the way you do.

I guess there's only one place to finish this and thats to say you guys make me so happy and i am honoured to have you all as friends weather you have a CHD, RA or your healthy your all my friends and i'd be lost with out you.

xx

ups and downs

Well i woke up this morning feeling better than i have done for a while so i thought great i can pop out with my brother to give my couisin her birthday gift and cards along with posting a couple of parcels. Anyway the journey to the post office was rough and my knees were hurting not good. Then got back and had my bath so that was good as the nights gone on ive felt the pain in ym right knee come back im sure its the stress of the football both my teams lost tonight, poor show! I am hoping i'll feel better in the morning ready for my appointments as i really dont want to miss another days worth of appointments.

I had my christmas tree put up today in red and gold it looks really lovely and was very greatful to the person who helped me as its all christmasys at my house now.

xx

Flare up long one

Evening all,

As i am sure you have all realised i have not been blogging much this past week, i am sorry as i no many of you like reading my blog. However i have had a rocky few days with my rheumatoid and to be honest i have not been up to much.

It all started a few days a go with my hands really hurting then i noticed they were swelling anf going red my knuckles in particular. My hands just hurt so i was doing as little as possible took a day off facebook to try and rest. They started feeling better and as it was my mums birthday on Friday i really did not want rheumatoid to stop me spending time with my family and just enjoying seeing them as my mum loved seeing family on her birthday. So i went out with my couisin, uncle and little girls to an indoor play area i didn't play though i whatched and waved to the eledest and sat with the youngest! I had a hot chocolate with my family, i could not even lift the cup it was huge and uncomfortable for me so i got the tea spoon and spooned it out! I then had my carer in the afternoon was still rough but the bath helped with the hot water my joints eased. Then Saturday i thought you know what its the run up to christmas so i decided to get my ass in to gear and went out with my little brother. We went to Birmingham to the bullring were i managed to get another jumper one that isnt fitted so really ease to get on and off when in a flare! Then we went to look at the German Market, it was lovely it was my first time as before now ive been in a relationship and had various comitments to see family friends so never had time to do anything for me. Anyway it was cold and it was packed had a few knocks on my knee's which i did not appreciate. I enjoyed my day out thought as it is always nice to see and spend time with my brother he's 18 now so wont be long til he hasn't got time to spend with his big sister!

Anyway sunday morning i woke up and OMG i was in pain my whole body felt like it had been hit by a bus, it was flared and hurting. I managed to get my new jumper on thank goodness i brought it when i did. I stuggled to eat my sunday lunch because my body was hurting so bad my hands looked like little football's it wasn't nice experience at all. I managed to get through the day with a long nap, i thought i would feel better in the morning as i had a busy day.

Monday morning came and OMG i was going no were my good knee felt like it had been hit with a hammer over night and you could feel the heat coming off both my knees and my hands and shoulders even my hips. My carer got me dressed in case i went to my appointments but i knew i wasnt going to be going. I rang my physio and said i can not come in which she agreed, cancelled my X-Ray also. Then had to cancel my breavement councilour to. I was not in any state for anything. I lay on my sofa and stayed there i went back to sleep around 11am and dad woke me up at around 3pm! My whole body hurt. I came online to catch up with my friends but it was painful, my good knee clicked and i could not move it for a while i was not happy, lucky for me i managed to get it moving again but it hurt so bad the mussell's surrounding my knee joint were hurting i move my leg i could have cried. Both my evening carer actually said i was not good i was very stiff and just "not herself" which says it all really as i am normally really up beat! I went to bed in pain and woke up in pain.

I was ment to be out tonight but i decided it was best not to, i was hoping to go football also but again i decided it was not the best thing to do as still not right. Spent the day sleeping and cuddled up on the sofa with the dog and a bunch of girlie films which one made me cry!!! I have been in pain again today but the main thing has been fatigue today, i am still in pain but i think coming to the end of this flare as i have managed a bit more to eat today.

I am hoping tomorrow will be a better day as i am feeling quite low due to this flare and i need to get things sorted out as i have a number of things going on in the run up to christmas and this flare has put me basically a week behind so now i have to hope i can get things sorted out quickly so i can as planned have no appointments or commitments in the week of christmas but i think thats out the window now as i have a Rheumatologist appointment on the nonday :(

I will blog tomorrow xx

Flare up

Todays is sunday and after all the excitment after the past few days my rheumatoid has gone hello i am here for you! Its decided to be very painful, i feel so unstead on my feet. Ive had a little nap today which was nice. I woke up feeling a little brighter my joints just dont seem to have woken up this morning they have stayed stiff much as my mood. Why is it when i go into a flare i always get grumpy anf argumentative? My dad just leaves me to it because he nos there is no point in talking to me. I have had to take some pain relief today because my whole system is hurting. Ive watched the football. Was so very sorry to hear of the death of Gary Speed today such sad news, my condolences go to his family and friends at this time.

I'm aware my blogs seem short at the moment its just my joints are not coping with this cold snap we are having in the uk so im trying to keep you all up to date but not over working my joints, what i need is a touch screen on my laptop much easier on the joints!

Fundraiser is in full flow at the moment so i am really pleased with the progress, pulling in a lot of favours and also getting help from my fellow suffers its great to have such support. Thank you everyone x

Fundraiser

So me and 3 of my friends have got together and decided to hold a fundraising event for NRAS who ive contacted about it. I am really excited about it because i hope to be able to spread my story along with other suffer's stories to the general public along with showing what NRAS does for rheumatoid suffer's. We have many idea's as you can imagine and it is all coming together nicely and i am looking forward to being a part of an event again and feel i am giving back to the RA community as many have helped me and i have been really lucky to have found such a supportive group of rheumatoid suffers along with my NRAS group who i meet up with every other month which i enjoy as its good to see and speak to others.

So yeah i hope that i can give some thing back to my wonderful RA community, i love you guys xxx

On another note today, its been so cold, my hands are still not really right but much better than they were at the start of the week. I managed to go out today but thats 2 days in a row and i am shattered i can feel my body is ready for a nap, i hate when fatigue hits :(

Will blog tomorrow :)

Much love xx

Catch up

So i have not bloged for a few days as my hands have been flaring and they were not up to blogging. They were extreamly painful and i kept getting pins and needles as well. Lucky for me they have improved enough for me to update every one :)

My new clothes arrived today! Its all very exciting! Todays i had my reiki which as ever was brillent it felt so good. Ive made a decision to re-look at finishing my Law degree. Also saw my doctor and he thinks my knee is a muscular problem. Which is good news as it gives more hope that it can be repaired. I also had a cry at the doctors because i found out he is retiring and he has been my GP my whole life, its a sad day. I saw my couisins, uncle and nan today which is always nice to see them.

Had a relativly quite few days with pain in my hands not been up to much really. I am sleeping better which is a plus and i have now gone 5 days with no gel on my shoulders which is a fantastic result for me and my arms are feeling good, so thats a real positive that some thing seems to be working at least!

Tomorrow is my mum's 50th birthday, i miss her so much this time of year she was my mum after all. She loved christmas and now the build up truely begins.

Oh yeah and i passed my practicle exam for my teaching qualification so i really am chuffed.

Blog more tomorrow as im feeling better now.

Much love x

Pre-paring for "That London" and other girlie breaks!

So today ive had a relaxation day caught the football this evening after i had my counciling session, which went well i felt talked through a number of things and maybe things are not as cut throat as people may think .. prehaps it isnt all because of loosing my mum maybe its just cuz ive had a lot to contend with and its all got tangled together.

Anyway i started planning my trip to london in more detail tonight! I am going to see The Saturdays in 3 weeks with my two of my mates, i can not wait. So we know we are staying at the ibis hotel well me and one of my mates! We are going to see the Saturdays on the friday evening which i am very excited about to! We are trying to decide how we are going to get to london though as we would like to have a celebratory christmas drink so really we dont want to drive but not sure it will be practicle with the wheelchair. So we have a few opition 1 is to the train from Birmingham New street to euston but then not sure how we will get from euston to wembley! 2nd opition is driving down but then we can not drink bad times! We are going shopping saturday with a checky christmas lunch to! We will be seeing the oxford street lights to by night which i myself am extreamly excited about! Oh and hopfully catching up with one of my RA buddies which will be really nice.

Ive got to figure what im taking clothes wise still ive got a rough idea im just worried incase i flare up so will need to take a few pieces just incase! We should jazz the wheelchair up with fairy lights and tinsle! I am really looking forward to seeing the girls and just chilling out!

Then in Feb im going up Birmingham to catch up with more of my friends the weekend before my birthday how exciting is that!!! I can not believe i'll be 27 but i'm looking forward to nandos woop!

Then in March im going to see JLS in Manchester with my couisin and i have to admit i am super excited as will be great to spend some time with her :) We are staying near the M.E.N so we can go on the friday night. Then the saturday we are going to do a bit of shopping and have some couisin time which will be fab!

So even though im in the wheelchair the message is I CAN STILL HAVE FUN! Go out with my friends and family it does take more planning getting the right hotel and stuff but its so worth it :) Bring it on i say

x

Clothes and me

In the past i loved clothes and shopping. New clothes gave me pleasure trying them on adding then to my already bulging wardrobe just made me smile! But then when i got Rheumatoid my relationship changed with clothes, they nio longer fitted the way they should, they were hard to get on and off, being a size 6 you see it my clothes always fitted the way they should, i got really discruntled with clothes and i no longer wanted to buy new ones, whats the point if you can not wear what you in your size? So i ended uop with the classic hoodie and combats, comfortable and practicle.

It dawned on me though so wat if i have to wear a size 8 and clothes are a little baggy what really matters is i can wear what i like i have my relationship back with clothes. Yeah people may think why is she wearing clothes that are a little big on her but u no what who carer's its part of my condition it sucks but i want to feel like VICKY again.

x

Loosing my mum

It was 2008 when i got told my mum had terminal cancer. I'll never forget that night, i was sitting on the sofa talking to my friends as normal when my aunty and uncle had come in. The previous night i had asked my aunty if my mum was dying she didnt reply because she didnt no if she should tell me. The next day they came over and my aunty sat on my feet so i couldn't run away, i mean who wouldnt run away? Then she told me my mum was dying, my beautiful mum was going to dye. I knew it my heart already but hearing those words just made it so real. My mum was my best friend, she looked after me, she made me who i am today, i even look like her. When my aunty and uncle left i felt this cloud of sadness i cried but then i did what vicky always does i sucked it in and got on with it. My mum was a few days later moved to a hospice. My uncle returned from Canada. You see no one knew if it would be days or weeks but we knew we all knew she was leaving us. I sat there every day just thinking of all the happy memories because i have lots. Like when my mum and aunty would watch me and my couisin do out "dances" they were quite good i assure you! Then i needed a new car because my old one had broken but i couldn't get it myself as it was a few miles away and my dad was of course spending every min with my mum. I hadnt been to the hospice yet. My mum lost her voice because she had oral cancer you see. So i missed having that last conversation with her, when she died i rang her mobile but it was my voice because she wasn't very good with technology! Its my biggest regreat i never went to see her sooner to hear my beautiful mums voice. My aunty said we could go and look and buy this car but only if i promised to go and see my mum, if my aunty hadn't done that i may never have gone because i was scared of loosing my mum. The next day my uncle drove the car to the hospital for me and i had a little go nearly throw him through the windscreen as i tried to press the clutch down but it was an automatic ops, sorry uncle! My uncle's aunty and couisins were all at the hospice i didnt see my mum the first time i looked around, it was very nice it didnt feel like a hospital, it had a front room and a kitchen to even a garden. Over the next couple of weeks i went to see my mum every day i spent hours with her, me and my couisins had a meal together one day before going to see her as my couisin and mum were very close to. It was so hard for all the family. It was my auntys birthday and my mum absolutly insisted on having a little party, she loved a family get together! We had ballons banners even wine in the hospice! We laughed and joked and i think some people got a little tipsy! It was the last family party we had but it gives us all a smile because it was typical of my mum wanting to celebrate! Some thing none of us will ever forget. My aunty and uncle were meant to be going on holiday on there annual 2 week break my mum told them they had to go, she made them go, she probably would have packed the bags for them if she could have, my mum believed in having fun! So off they went with a hug and a we will see you when we get back, because we thought my mum would hold on til they got home it was only two weeks. Then my couisin was due to join her parents and i didnt want her to go but again my mum insisted! My couisin gave me a hug and told me it would be ok cuz my uncle was here and she would be back soon. The week kind of went a long my mum had a really good day and then just went down hill, my uncle and dad decided to stay at the hospital that night cuz uncle thought it was right. My mum died that night, my beautiful night died on the 20th August 2008. My dad came home i was asleep. I woke up and my brother was no were to be seen dad told me mum had died i went cold, i was told later my brother let out an almighty scream when he was told, ill always be here for my brother, love you bro. I dont no what happened to be i went online to facebook and told every one, i text my aunty to tell them. I got in my car i drove to my uncle and i just cried and cried. I dont remb much of that journey or that night. The next morning i just got up, went into town got a card and flowers for the staff at the hospice. I then took them there signed it from all the family. My family came home from holiday i shared my memory box. In the coming days mum funeral was put in to place she already choose readings and music. The funeral arrived, she didnt want us to wear black but i couldnt not so we broughnt some bright flowers to wear on our dresses me and my couisin. We got through the day, my aunty did everyone proud doing the readings we were all so proud. The crem was the worse the coffin moving just got me it suddenly felt real.

And that is simply the start of my rheumatoid story.

In Loving memory of my mum forever in our hearts xxx

Lovely Day

Last time i was very good and went to bed early well for me anyway! As i knew i had to be up early this morning! I slept a little uncomfortably but i was ok. Woke up with the most painful shoulders i have had in a while, i think its the cold weather and the change in transfers because of the new wheelchair hopfully it will settle down again if not i have my pain relief at the ready!

Dad was here at 8am i havn't seen 8am since October when i went to London with my best friend and we met my other mate down there, so it was a bit of a shock and to be fair i nearly took my dads toes out with the wheelchair which was a little funny. I wanted to go back to sleep so i couldnt put the heating on as i would have done lol so instead put on Waterloo road from wednesday to catch up on it :)

My uncle arrived at like 9.30am i was still awake and ready hurray! We drove down to webbs to meet my couisin and girls i could not believe how busy it was! Anyway my couisin was running a little late so we stood waiting with her friend. Then she arrived and the eldest wanted to sit on my lap which she stayed there until santa came, we waved at the elves as they came walking by and talked about santa, all the festive music made me get a little excited because its nearly christmas! Santa arrived at about 10.20am the eldest stood by the rail and waved at him backed away a little when he went past, the raindeer were fab!

We walked around the garden centre well my uncle pushed me and the eldest sat on my lap! At 11 we went to see santa! We walked through a mini wonderland with all fairy lights up, christmas tree's fake snow, snowmen, toy elves and even gifts wraped up! Then we had to wait til the elf came to get us to go and see santa! Now remeber there's 3 adults and 2 kids! Me and my couisin were excited! We went through and eldest saw santa she wasnt keen but she did tell him she wants a bike and a scooter. She didnt want to sit on his knee with her younger sister so we all ended up in the picture next to santa! My couisin was on Santa's knee and i had eldest on my lap in the wheelchair! We left santa and she choose a gift from santa as you get to choose its like a little toy warehouse!

Next we went to see the carasel now at first eldest was going on with her friend but she changed her mind and didnt want to go on! But she decided she would in the end if my couisin went on to! So there's my couisin going on this ride with the kids it did make me smile! Eldest was waving at me as she went past! When they got off my couisin said she felt a bit dizzie because of going round backwards!

Overall i had a really lovely morning it was so nice to see them and spend some time with my family, i love you guys.

I came home rang my dad to tell him i was back and saw if my brother wanted to go out he said he didnt so i lay down to go to sleep next think i knew i had dog under the blanket with me then my brother was going "get up then" haha!

So my brother took me into my local town, i manmaged to get 2 jumpers which i had been wanting as it is winter and they are easy for me to get on and off which is of course a plus! They are nice to! Then after months of looking try to get shoes on i eventually found some actual shoes well black pumps that fit my rheumatoid feet its amazing i feel all womenly wearing shoes! I forgot the last time i managed to get some shoes on my feet, i can not wait til the saturdays now ill wear my shoes jeans and a new top when i find it! Bring on the saturdays :)

Love my little brother for always being there taking me out even when he doesnt really want to because hes 18 and he still helps his big siter out, hes had a lot to contend with in the past 3 years to and i love him for being so strong and dealing with it all so well. Love ya bro!

I came home and had a lovely nap for over 2 hours i needed that! Now im chilling talking to my facebook/tweet mates! Blues drew today again peterborought united which i thought they would! United are currently winning 1-0 against swansea we are on 72 mins at the moment!

All in a really nice day which ive enjoyed even though im slightly shattered! I love my family so much and always will.

X

journey

Its strange really to think three years ago i was a young women with the world at her feet, i could have gone in any direction i wanted. Now 3 years later i can not even walk to the toilet how life changing is that.

I have a condition called Rheumatoid Arthritis its a painful and tiring condition. I often dont sleep a good solid night sleep for weeks but then i can go days with nothing but sleep, it stops you planning what you can do, its funny really because i want to plan stuff for me but im scared to yet i have my 2012 diary filled with appointments and other medical related comitments!

I sat here and i though who the hell am i, i mean i no im vicky im 26 but then its i have RA not like others who say i have this job im in a relaionship i enjoy this that and the other. No im just vicky with RA thats not how i want to be known.

So i have to go on a new journey im spreading the rheumatoid story, people who didnt no about RA now have an understanding and im glad of that.

The past 6 years have been really hard and painful at times and at times i didn't see a way through but now i know im just starting on my journey and it'll be interesting to see who comes out, hopfully a very happy young women who has found herself again.

Just a final note i was 5stone 11 last week and today i weighed 5 stone 10 but i am eating and i will beat this :) x

Friday yet again!

So i got up early again this morning 9.30am as i had an appointment so that wasnt so bad as my body was ready to get up and go to the appointment. Was at the docs for a good few hours, then poped to do some shopping which wasnt to bad either.

Got home had a few minutes to check my emails and catch up with a program i'd been watching which was good nice to have a bit of vicky time now again.

Then it was time for my bath, we ended up having a good natter today and even forgot to weigh myself. However my carer/friend did ask her son to kindly put a curtain pole up for me to hang some curtains in my large window. It looks really good, slowly feeling more homely. Had a bath then as my hair needed washing. It was nice to have a bit of banter to with some one else!

So after wards i had my tea i had bagel and some chips which was a whole meal instead of just a bagel which is what i often have.

My knees hurting a little today because of the doctors still insomnic. Had a few hours of reflection last night. Msybe i'll blog about it later on.

long day

I was up early this morning 9am and i couldn't motivate myself at all. So i came in to the front room and went back to sleep. I lay down on the sofa and just driffted off. I woke up at 11 and got ready for my appointment. The appointment well really well. Then i spent an hour relaxing, got ben in the kitchen ready for me to go out its much easier now with the electric wheelchair.

I'm getting better with the wheelchair now i dont have to b in 1st speed these days! Im hardly banging into things now. I'm a bit fustrated because i want to go outside these days but i crnt it is awfully fustrating.

Had my reiki today it was really good as useual made me more tired than normal, although i did fall asleep during the treatment today.

Then got home 5 mins before my next appointment. I was off to see a game that a group of disabled people play called bocha. Basically there is a white ball and u have to b closest to that with your coloured balled. it was really good, meeting people with different disabilities and all being included. I had a lovely time. I may even start playing with them on a thursday evening! I primarily went to find out about helping out with a childrens group which i'm hoping i'll be excepted for. I also found out about a wheelchair basketball club, which caught my eye its on a sunday i may go and watch it see how it goes!

Going to sit and watch the darts and chill to my music now, ready for tomorrow

x

Thoughts

Its been a long week with many different things happening. Monday i was dreading breakfast now it just seems a natural thing to have each morning, even i found it odd this morning how it just happened! Which is fantastic i can not actually believe the progress in that area.

Then my evening meal to have the food cooked and served by some one else is a real achievement today 2 people actually handled my food who would have though that a mear few days a go certainly not me. Now i am looking forward to a meal out with my friends next month in london and even a potential meal out with one of my carer's what a turn around in such a short space of time. I feel pround of my self, relieved, my eating can only become stronger its scary getting to a point when you just dont no what you can do any more, like when you look at food and feel like crying and you use to enjoy it, its like a real sureal feeling. Im also trying to snap out chocolate of course the occasional bar wont hurt but if its in my daily life i could easily slip back to relying on it and become dependant on it and believe me when you can eat 6 bars of milkybar in a row and it seems normal and you crnt see why people think its nit ok to then not eat a meal its a real problem. I think back to only last week and it makes my cry im very lucky ive been caugh this time so quickly from falling, im lucky to have some wonderful carers.

On my electric wheelchair its going really well, i am so pleased but fustrated i want to get out and about! Its going ok ive only a few times took out the door frame, the battery pack to its all good practise!

Feeling ok in general bit stiff but pain is bearable to day. RA has been making me thunk about things in and i realise you have to go for it when you can because you simply never no what this condition will do next. I hope one day to see all the places on my travel map because i have yet to see them and its a long standing dream of mine.

life is tough but achievable keep going when things get tough because each and everyone of you can achieve your dreams with a big smile and the support from those that love you weather thats, supportive fruends, family or people who share you problems or share your dream wveryone has some one to believe in them.

x

Electric wheelchair

Morning! I got to bed at 1am this morning and was woken up at 9.30am so still tired thought i might have a nap on the sofa but to be honest didnt happen! So yesturday was a bit exciting, i didnt watch TV all day! Instead i listened to my JLS album! In the afternoon the lady came to hand over my electric indoor wheelchair and its fab, ive been racing round the house after the dog at 4mph! Its a lot harder than it seems let me tell you! Its getting through the doors and stuff that really causing me problems! Ive got stuck a few times and even taken some paint of the door way it will come with practise it is great though i can just go any were in the house by MYSELF its weird, i kept going in the kitchen when the lady went yesturday just because i could!

I managed to eat 2 meals again yesturday which is great progress must keep going! I know i can do it, just take it slow and sure. I can achieve anything i want to with a little help from those i trust the most, you know who you all are!

I dont have much planned to day as i need to just chill out i have 3 appointments in one day tomorrow! I tell you my organisational skills are good!

Last night trying to get from the bathroom to the living room was funny in the end after my bad attempted the carer had to take the control stick and get me in lol this morning i was tired and not much better my excuss was im tired!

Anyway i'll blog later got to get a few things off my chest, see u soon.

x

Long day with ups and down!

I went to sleep last night full of what tomorrow would bring with excitment and fear in many aspects both, i had an unsettled sleep tossing and turning, my dad came to say he was going and i was like no you crnt the wheelchair. So dad stayed it wasnt long before the wheelchair was delievered!

I got up and i was really worried because i knew i HAD to have my first breakfast infact i felt sick with worry. The person helped me get up and get ready for my day, had a look at the new wheelchair looks good im looking forward to using the new wheels tomorrow ive noticed it has a horn beep beep out my way!! It was time for food, feeling sick i asked for the cereal bar. I actually felt sick with worry, i took a deep breath and i started eating it, it went down well, but then the panic set in i was in virtual tears it was the most awful thing. But i over come it I DID IT! I ate my food and enjoyed it.

The post man came with my JLS album ekk excited! Ive listened to it loads already! Its the best, well done JLS boys we jlsters are proud as always! Then it was time for physio. Although in between all this i had so many panic attacks i cancelled the person coming in for tea, then i regreated it and had it again!

Physio was ok i tried using some walking frames, and got told to keep my posture good! We have a plan now, i have to have some xrays taken of my knee to figure what is stopping it from getting straighter again. Also got taugh about boards that you slide on and off the wheelchair on, now they seem really good. Its going to be a long ride but isnt everything with rheumatoid?! I'm getting refered to a specialist rheumatology physiotheropist as well so hopfully that will help me as well. Ill try anything for a little normality. I also got some relaxation techniques they helped mind you did send me to sleep!

The big event was next food time. The person arrived and we talked about my indecision in detail it was ok we went into the kitchen and made the tea, i was talking trying to keep my mind off the coming "eating". I had 3 crackers with cheese and some pork pie it went down ok, i felt ok, it was such a relief to be able to actually eat some thing! It gave me some kind of relief and inner statisfaction that i havent experienced for a long time. Although i was nervous and felt unable to do it i did i achieved it by myself.

I then had my counciling which went well we have some thing to work towards now. I think its going to be ok. He helped me worked through the things in my head, i was laughing because i could see that what i was saying wasn't logical.

I miss my mum so much and i want to achieve the normality for my mum because being the way i am now isnt going to help any of us, and i need to get strong again to live my life the way i want to.

Inteligence can both be a great thing but also a hinderance never underestimate the power of inteligence. Well im going to chill out for the rest of the evening as another long day tomorrow, roll on wednesday!

x

Energy i forgot i had!

I had terrible insomnia last night i didnt get to sleep til gone 4.30am i was tired but i could not sleep! So i get woken up by my dad i went into the front room and put on the TV to watch the parade for remeberance day. My dad hung out some washing for me then we got ready to go to his for lunch. We get to my dads and my brother isnt up again! We knock the back door for about 10 minutes then he comes and opens the door! We carried on watching the parade. My arms have been a bit stiff today but the pain i was experiencing seems to have gone, which is such a relief. I had my lunch managed to eat quite a bit today. Then me and my brother had a bit of a snap and i was ready to come home. Me and dad had a snap then, this happens a lot when im tired i get snappy when your in pain and tired on top its not a great mix really. They say you take it out on those that you love which is totally correct. I couldn't get my top off today but i needed to go to the supermarket, so dad zipped up my coat and in we went, daring or what! I got the shopping bits i need because tomorrow i have a busy day and i suspect i wont have time to go and plus i needed to make sure i had food in for the first time when some one else is going to cook my tea for me a none family member im feeling really worried about it and my stomach is nervous, although i now know who is coming in tomorrow and i feel a little bit better already have a plan ready as to what i am going to eat. Dad brought all the washing home and left it.

I must have been tired as i got in dad did my hot water bottle and put my blanket on me next thing i knew dad was back to walk the dog, so im talking maybe 2 and a half hours, i hope i get some sleep tonight. I had a second meal this evening which is rare for me. It gave me a boost of energy i'd forgot i could have. So i went in the bedroom and sorted out my "towl and linning" cupboard which is now all nicely out away and ready! Then i sorted out my other draws, ive never had so much energy of an evening to be able to do some thing. I admit my wrist is now hurting but i have a lot of satisfaction from being able to do some thing in the house that needed doing. Went to go to the bathroom and that darn lip beat me i was so angry i stood up and pulled the wheelchair over it and said yeah i beat you! Im just chilling out now ive got a new film to watch later. I think i'll sleep better tonight!

Tomorrow is the BIG day ive been waiting four weeks for, i get my electric wheelchair, i am so excited about recieveing it but i am also a little nervous but i no it will enhance my life further so yes it is a little exciting.

Lots of Love x

Yesturday, late!

So today has been a strange old day. I got up with a scowl on my face but then cheered my when my brother said he’s go into town with me to get a few bits, so i got ready enthusastically, i noticed some thing my arm wasn’t hurting it been painful for months but suddenly it wasnt hurting it felt really good, to feel no pain! Then my brother picked me up and off we went into town, i got all my christmas cards which im going to write tomorrow, i also got my nans photo frame for xmas and a little gift for my friends daughter and a few other bits! Then i came home poped online and spoke to a friend and my aunty and arrange to go and see Santa next week at webbs with my couisin and the girls, yes i am looking forward to it at 26! I asked my friends for their address’s so that i could send everyone’s card to the right address! Then an old friend poped in for a couple of hours we had a good chat and catch up, yet again i got another kick up the ass to get stronger and start living life again. After he left dad was here for food i had 2 bagels today and a yoghurt after wards i am trying so hard to get myself sorted. Dad left i came back on the laptop for a bit and watched the england match, i could not believe it we won again spain the world champions a great result for england, well done super frank lampard, or should i say captain frank! Then i feel asleep on the sofa, i must have gone flat out! Next thing i knew my carer was here! We had a good chat and yet again i got a kick but its what i needed to have. When she left i felt a lot happier in myself. I went back on the laptop put my tunes on and had a good chat to friends on facebook and twitter about some random stuff. I am off to my dads tomorrow for lunch as always. I am determind to fight back.

Thank you to everyone of you who is standing by my side in this battle and telling me what needs to be said. Lifes a challenge you can win but you need your friends and family by your side because they keep you going espically on the tough days.

The Good The Bad

Evening,

Had a good sleep last night thanks to my new tablets! Woke up everything was ok, had a bit of a ramble about things. Then had an appointment and i talked a lot, but think everything came to light that i was worried about. Before i knew it was time for my bath, i decided to weight myself before having my bath and i came in at 5 stone 11 not my lowest weight and in a way what i had expected but i dont no it some how shocked me to was like i was reassuring myself that it was ok and it wasn't my lowest weight ever so i would come back from this quicker than i expected. I'll keep you up to date with my on going weight journey, one day i would love to get back to 7 and a half stone pre-RA weight.

Then after my bath i managed to stand up on both my feet which felt so good and then i took some more steps, every step feels like an achievement to me. It makes me feel like im fighting back! I hope that one day i will walk again even if it just around the house it will give me such enjoyment. Im fighting back Rheumatoid i may be down but im certainly not out.

Missed out on an evening out with my couisin and her little girl again becayuse of no wheelchair seats available which makes me sad as id love to go out but one of these shows i will get tickets!

Tonight im chilling out and eating chocolate, thinking about things.

Difficult day

Been a long day, unfortunatly i was up late as i didnt get much sleep last night, insomnia had hit and i wasn't happy. I had like 10 mins to get ready lucky it was a carer who could do it quick and one that knew what to do it and quick. Got to my appointment and then waited a while. Saw my doctor and was given some new drugs to hopfully help with my low mood and general downess. I am stubbon its offical my doctor said so! He also gave me a lot of wise words about my mum passing away things i think i needed to hear. He wants to help me which is most important. The worse thing is the realisation that driving isnt an opition right now and i may never do so again as if this condition isnt bad enough its now on the verge of taking away the last independance that i have, rheumatoid you really are giving me hassle. My gp did say to me that the rheumatoid has taken everyone by suprise in terms of my doctors, to be fair i have a lot! But hey rheumatoid took me by suprise to so i guess its a mutural shock!

I then went for my Reiki which was good as always im tired tonight though so thats why i am writting the blog earlier plus i was out last night and didn't sleep well at all. I then came home and chilled mainly im tired and got a lot of thinking to do.

I cried twice today, once in front of my GP when i declared that my life was a mess and its falling apart, which i no only i can change with the help from my amazing medical team and support network without them this battle would be very hard.

The second time i cried was a rare occation as i broke down to my couisin who i love very much im normally so strong in front of my family but i just broke into tears and admited everything my eating, lonelyness, feeling depressed, my general fears for life. She cried to we spoke about my mum to and i think it upset her which was not my intention.

Found out my Saturdays tickets will be posted next week thank you wembley arena! For my upcoming girls weekend to London which ive been waiting for, for like 6 months! Can not wait for my girls weekend, a nice break!

RA meeting Day

So today i got up late as is always the case when you no you have things on. I was in pain and in such a flap had 30 mins to get ready but i really wanted to just chill out and talk this morning1 Oh well! Had my meeting at 11am i felt it went quite well my feelings were expressed clearly and i think things will now be put in place to make things better for me both in the mornings and evening. Also accepting to have people to come in and do a meal for me which is a huge thing because i dont no how i am going to cope with some one else coming in my house and cooking my food, because of my phobias, i guess we will have to wait and see but if it doesnt work then i guess it was just to soon and i can easily try again.

Then i had to pop out for some pet food why do they always run out at the same time! Always expensive pet food day!

Then i had my bath which i always enjoy because we have a chat first and after wards. It feels more like a friend is visiting rather than a carer in fact i do count this person as a friend opposed to a carer as i trust this person with my food and even walking ben! I feel happy knowing this person is coming in and feel i can tell her my fears, i can be upset, happy or anything in between basically totally honest about how i am feeling which feels so good. Some times i dont feel i can open up to my family because i dont want them to be worrying about me in pain and struggling. I dont open up to my friends either because i feel that i can not as they just dont understand and i dont want to upset them as i know this condition has hit them to seeing there friend go down hill so rapidy.

Thank you so much to this person you know who you are, you really have made a difference to my outlook on life. I apreciated it more than you can imagine.

Then i got ready for my Rheumatoid meeting. I always enjoy it. This time it was a social event and for the first time i was left alone and i had to speak to people. My confidence is low and for me to be left in a room of people just got me! But you no what i was fine, enjoyed myself i spoke to some new members caught up with other members i've seen before. Talked to a member about opportunities in teaching which was a great help to me. I also spokle to a lady who helped me realise that i need to have some "vicky" time things i enjoy. It really hit a nerve and shes very right i do need some vicky time which is constant, time for this girl to flower!

Busy day tomorrow i have the doctors and then reiki then im going to start looking at a few things for me, because you no what i am MORE than rheumatoid im a person and i have things i enjoy.

xx

New ERA

So after yesturdays excitment i got up this morning and decided it is time to make BIG changes! First its time to move forward get on with life, after all there is a life out there for me to have i just have to go out and get it! RA aint won yet!

I also have to get a grip on my food phobias, its scary when i look at how scared i am of food which is all relating to loosing my mum in 2008. It prevents me from going out with friends to eat, enjoying a piece of cake with my family for birthdays, it prevents me from trusting others to cook my food because i dont trust them. I know i have to get over this to gain more strength to move on wards and upwards! But more importantly it will help with my physio to. Eating phobia's are not some thing to be taken lightly they seriously damage a persons life, social events become a living nightmare. But with the help and support of both medical persons and friends and family you can of course beat it in time, it is a marathon not a sprint but it's worth it.

Went through things to day while i had some time to my self worked out what was importabt and wanted i wanted, you no all i want is to be HAPPY and have my family and friends around me.

Friends are your choosen family

Dads Birthday!

I had a late night last night i just could not settle at all. By the time i eventually got some sleep it must have been around 3am! Thats one thing i love about social media there is always some one around when you crn't sleep.

I got woken up by a large black labrador called Mel! She's my dads dog she came and lay down next to me on the bed while my dad walked Ben! I must have gone back to sleep as the next thing i knew my carer was here. I was in a lot of pain this morning i couldn't get myself up i couldn't even get my pj top off due to the pain in my arm. I had a good chat with my carer which was nice.

I then rang my social worker to try and sort out getting to the hospital. Luckily she agreed i could use my care agency to get to the hospital. Luckily they could fit in a call for me to get to the hospital. I managed to get my top off and put my hoodie on ready for my appointment. My brother poped in for 15 minutes to check i had everything ready for later.

I then i went to the hospital for my appointment. It was nice to talk to others, I'd never meet her before she was my new physio she was really nice and understanding. She thinks i need to see some one about my eating issues. She also said i have mussell wastage on my arms and both legs which is disappointing. She was impressed with my strength though which is fab and my movement in most of my joints is good. Well it was thought i had Rheumatoid in my shoulders as well but the good news is she thinks it isn't, how good is that? She thinks its strain from using the wheelchair. She looked at my knee and she has some plans to hopfully get me back on my feet, YES both feet! It may not work, i may not walk BUT she thinks there is some optamistic signs the fact she managed to get it a bit straighter with a message behind my knee! Im going to work really hard on mondays from now on, I WILL WALK or at least STAND again! Rheumatoid has not beaten me yet!

Physio said i was really inspirational for everything i have gone through and i am still fighting to get back my life back on track. There is always hope never give up on your self!

Then i spent some time with my uncle, couisin and my couisins little girls. The eldest sat in the wheelchair holding the umbella with me until we got the cake for my dad then she walked along side me. We went to my dads had chocolates and birthday cake with my dad and brother! Dad liked his gifts and cards and was godsmacked by the hot air ballon ride! I can not wait until March to watch his face as he goes up in it, while me and my brother spend 4 hours in the car waiting for him to get back! Overall dad had a good birthday1 Happy 70th Birthday Dad!

I came home and had a little cry on the phone to my aunty as i felt bad about how things were. But i must keep the positive thoughts up, who no's what will happen in 2012! Walking/standing even happiness.

Thats all from me!

The night before

I always get excited the night before anyone's birthday more so when it is a major birthday because you no they are getting some thing they will love, but more importantly knowing you give them back some thing for all the help and support they give you over the past year, my dad does a lot for me and i love him. He's my step dad but he's like a real dad to me, he would never let me struggle knowingly, he has even offered to walk 3 miles on his birthday to help me in the morning, hes the best, i dont expect him to but the fact he said he will means a lot, i hate RA even means he has to contenplate it but i love the fact RA has made my relationship with my step dad much stronger.

Well today i slept 10 hours again, on top of that ive had 2 mini naps. I think i am going through a stage of pure fatigue its a pain it really is. Havn't really been up to much i went to my dads for lunch which was nice as i got to see my brother to. He took me to the supermarket to get a few bits and as ever its always fun im sure he gets a power trip from it! Then came home i was going to watch the second half of Wolvs v Wigan and then Fulham v Spurs but i fell asleep for part of the games, ah well least it wasnt one of my teams! Although we don't want to talk about Reading v Birmingham because we lost its such a shame!

Tomorrow is going to be a long day as i have hospital for 2 hours at a rehibilitation unit for my knee! Then im going to pick my dads cake up and then going to see him with my family! Then home again. Ive got my RA meeting this week i look forward to seeing my NRAS people (national rheumatoid arthritis society) im also seeing my doctor this week and im going to get my couisin a birthday card on friday! Im on count down for my electric wheelchair which is coming a week on monday i am so excited and hope it will spell the end of the constant flaring as my joints wont be under so much pressure!

blog again xx

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.