Sunday, 21 September 2014

Being a a burden on Friends

I know I've blogged about this many times but u know there's always something to say or discuss around the topic of friends after all things happen all the time that change the dynamics of friends u know?

You see I have lots of friends or maybe that should be acquaintance, I love social media because it keeps me in touch with many people. Only earlier in the week did my twitter pals do me proud with retweeting this very blog and we reached just under 50 thousand people. My Facebook friends too shared my blog all of which helps me to raise the awareness of rheumatoid arthritis and I'm proud that most people I come across on social media now can tell you about rheumatoid and say it's not just arthritis you know! Many people wouldn't know what it was before they spoke to me so I'm pleased I've been able to help people understand ra a little more.

I'm real lucky to have friends throughout this world and that's great and many I'd have not meant if it wasn't for chd or ra and for that I'm really great full I've sure meet some awesome people and been able to visit lovely places and have other adventures next year!

Anyway back to what I find hard the most. I live in a town that is well my home town I was born here went to school here! Yet I don't feel I belong here I mean I see my dad, brother and cousins but I have no friends here in fact I don't remember the last time I had a friend pop by! That's part of the problem here I feel so isolated with having no friends!

Saying that I hardly see any of my friends after my mobility got worse I found I was reliant on my wheelchair until I had to totally rely on it. It's no fun having a friend in a wheelchair I guess who crnt do everything and go everywhere you can. I mean what a bloody burden having a friend who crnt dance with you or go In the main crowds at gigs or sit on the terraces at the football, or go in all the shops because of steps or just plane and utter disorganised shops! Who wants to go on holiday with a friend who crnt get there own drink or get in the pool .. Well no one does really that's the thing really it's no fun having a friend in a wheelchair well hey it's no fun being in a wheelchair you know?

I'd love to see my friends more and speak to them more but guess that boats well and truely sailed!

So yes I feel like one huge burden in my friends and just wish I had one friend who didn't mind spending time with me and doing all the fun things I can still do and do still enjoy, football, gigs, holidays, shopping, meals out, traveling.

Wow that felt good bet I have upset a few people but hey go u gotta express it!

O.s I know people are busy and have commitments this is just how I feel I don't mean to upset anyone.

High heels and me

I was reading a post in one of the groups I'm in (I have a big picture to share with you all when I've been on the laptop to do with this group!) anyway and the topic was what clothes and or accessory do you miss most? I didn't even think it was instant reply for me high heels!

Now I'm literally 5ft and I always wanted to be taller lol so heels were literally my thing! From high school I use to wear heels to get a bit taller! And through out light well u til 23 I wore heels in fact I loved heels so very much.

I had a collection of heels every colour you can think of even bright yellow! They were my thing I had far to many but I was always buying more lol! Heels made me taller gave me confidence!

When I got diagnoised my feet went really quickly the first place that actually flared up. I was so upset and distraught I bagged all my pairs up I must have had 70 odd and put them in a shoe bank!

Now 6 years on from that terrible day I cried as they went in the shoe bank! I still think of them and look at heels with awe oh how I wish I could wear just one beautiful pair of high heels!

I now wear trainers but they just don't make me as happy as high heels lol!!

So if you wear high heels smile extra wide because u know they feel good treasure your heels!

V xx

Friday, 19 September 2014

Fatigue

Having rheumatoid isn't just about living with pain like that isn't enough but I also suffer with fatigue lucky for me it's not constant it comes and goes but when it hits it really hits.

Now the weathers changing the pains stepped up as it does every autum and I will focus on my up coming trip to Seattle to allow me to get through this tough autum/ spring

Anyway back to fatigue. This week I've suffered so bad it's been silly. Tuesday alone I could only stay awake for 2 hours before needing a sleep and had to foce myself to stay away to take my medication! I have no idea what happened on Tuesday I was that fatigued!

Friday again has been a tough day for fatigue I went for a nap as my body was lagging and guess what I woke up and I'd only slept for 3 hours!

But with this in mind I also suffered insomnia on Thursday night it was ridicules I just couldn't fall asleep even though I was absolutely knackered as the rest of the week. Some have questioned if I have ME because of how I can get for me it's ra just rheumatoid and fibromyalgia having a good go.

For me it's time to relax stay in and get through the winter best way I know a hot water bottle and the heating on!

So here's to spring :) xxx

Tuesday, 16 September 2014

It's been a rocky few weeks!!

So I'm going to touch on a few things on this blog..

Firstly I have been seeing a new lady called sunita she's an OT who is helping me with my hand situation. She's really nice and takes time to listen which is important to me. We have have been working on my right hand Initially with getting better extension, this has worked my little finger goes a lot straighter! I have a hand/wrist splint that helps stretch my hand and then using a hand massager that helps work my muscles which helps with extension.

My left hand we are starting to work on now. We measured my hand at normal which showed bad numbers but expected. We then got a palm splint made and measured it again they had moved by 10 degrees!! But under pulling my fingers we can get another 20 degrees which means there's defiantly hope!

I have real hope for my hands again and hopefully that will be success and help my day to day life with better hand extension and usefulness!!

Then I met a new physio who took time to talk to me and listen to me!

We looked at my measurements not great my good leg is at a 33 degree angel which is worse than I expected. We looked at many things but unfortunately I was told that I won't walk again so I've been trying to come to terms with that.

I saw her a week later and she measured again after circling feet, bum clenching and knee stretching! My bad leg which is at 85 degrees was now at 75 degrees!! She had me on my feet well one leg trying to build up strength and get any movement or muscle building that's possible. I've been given another exercise a town round the foot and stretch that leg!

Found out I feel things in places most don't I.e top of my knee instead of behind!

Finally I found out that I have excellent core muscles!

So there's good and bad news I'm feeling a little unsure how I feel at the moment.

I will blog more

V xx

Heart update!

Well firstly I best update you on my heart appointment last month!

As always we were running late in clinic, I never expect to go in on time! I had my echocardiogram for my consultant to get a good look at my heart as he hadn't had one done in London for two weeks!

I chatted away with the lady doing the scan as always I get nervous and just go into motor mouth lol!!

I saw my consultant later and he said that my heart was good and enjoy America!


But ....

I then got a letter and I went total panic. My heart does had a leak but I found out this is common for people with my heart condition. After talking to Fiona my heart nurse I felt a lot better about the letter and was able to stop worrying so much.

All in all good appointment happy to see my team back in twelve months

Xx

Saturday, 9 August 2014

Six years

This month marks six years since my mum passed away and six years since rheumatoid showed it's ugly head.

In 11 short days it will be six whole years since my beautiful strong mum lost her fight to cancer and how she fort a long battle with a smile on her face. You see I didn't realise just how long she'd battled u til she'd passed. All the time I was out living my life totally oblivious to my mums battle. Which makes me kind of sad because if I'd have known maybe I'd spent more time with her doing things my mum like going out drinking or watching ghost!

You see near the end she was in pain she couldn't eat she couldn't talk, she could write though she wrote a lot of notepads. But you know she kept smiling.

She left me a memory box, it had a letter and a notepad in it and it said so,e real nice things she called me "her tricky vicky!"

After my mum died I got rheumatoid and life got so much harder it was like being hit by two massive bricks in the face!

But six years on I've fought rheumatoid, I've fought an eating disorder and I'm in recovery now and I've suffered depression but I havnt stopped smiling and being there for my family and my friends. Some days I want to turn my phone off lock my door and say no more but that's not what my mum taught me she taught me to fight what ever you face with a smile on your face and know that your family and friends will be there for you because your there for them .. That's what mum taught me.

This week I'm starting my chemotherapy medication again i face it alone with a smile on my face and the knowledge I'm on my own. Come August 20th I'll be on my own come the weekend before I'll be on my own just sat here thinking and crying no doubt but that is life u have to keep going and make the best of it.

V xx

Thursday, 24 July 2014

Heart hospital

So I havnt blogged for a while and I have a bit of updating todo really but first I wanted to write about my upcoming appointment.

So next Wednesday I go back to the heart hospital it's been a while since I saw my team and even longer since I had an echocardiogram and I'm seriously scared! It's not just about hoping the hearts ok but also the waiting to see if I can finally fly to America after disappointment earlier this month.

It'll be nice to Fiona and prof deansfield I'm hoping they can see a difference in me last time I saw them I just sat and cried. I hope my appointment goes well. I hope no procedures are needed I hope I can fly.

I'm just so nervous and anxious about this appointment I have butterflies in my stomach on a plus in a day in London with my brother!