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!

Thursday, 5 June 2014

Update and mays adventures!

So I haven't update for a while so I thought I'd do a little whistle stop update from me! After all it's good to talk sometimes!

So since I last blogged I've been seeing my gp regular who's helping me finally see that light at the end of the tunnel there's a long way Togo but I'm definitely seeing the light it's getting brighter!!

My eating has improved!! I went to a restaurant recently and had rare beef (yup you read that right!!!) and then I went for pizza with my brother to! I know it's not that big but for me it's a real big thing because of my eating issues so I'm really pleased with that!!

I started seeing a councilor to help with the loss of my mum and I think it's helping to be able to talk things through. I know some don't like the idea but for me it works well and it's helping me get back on track.

I also started seeing a hypnotherapist and this is really helping me see things better and helping me to start thinking less negatively again which is quite a feeling!!

So other than that ..

I went to London at the start of may with my cousin we had an absolutely fantastic time, we went to the royal Albert hell for the first time and it was fantastic. We had a good chat and lots of laughter and joking! And some fun with the wheelchair and luggage lol!!

Then I went to Manchester the following weekend to meet up with my friend and see mcbusted who were amazing and we had a few drinks in the Lowry after! I've never sang so much lol! We also got breakfast which is unusual for me but then I had drink a rather huge glass of wine haha!!! (It was more like a bucket!!!)

Then I went back to Manchester 2 weeks later for a fun filled bank holiday weekend.  I met up with my friend mark and we didn't go to football this time, (many regular bloggers may know he's my football buddy!!) we went and got a light snack well I did (who'd have thought is be the one eating!!) then checked in and I had a cheeky lye down!! So when Duncan showed up I wasn't ready ops! I got ready with his guidance as it was raining and of course I wanted comfort! We went to spoons and met up with Eric and some of Duncan's others friends and the court yard then headed to the venue to see some brilliant bands, chameleons my first time live what a great band! Wedding present and neds atomic dustbin who were also good! Then the walk or roll back to the hotel! Sunday was exciting as we had planned Togo to rio Ferdinand's restaurant rosso's the service was fantastic and the food was lovely! We then went for a quick change if clothing and off to coronation street tour! It was a really good day. Monday came and I was all emotional because I was leaving Manchester and saying goodbye to my friend and something felt different don't know what but something had changed.

So now we are in June and I'm off back to Manchester for soccer aid with my cousin and I am so excited to take her to her first ever football match and of course to the theatre of dreams, old Trafford!!

I'm going to start updating this more as things are moving quickly with me now. I really hope you enjoy my posts and thank you to my readers who have stayed on this journey since 2011 it's been tough writing at times, we've shares some good and bad times through this blog, I hope there will be many more good and positive times ahead.

Thank you finally to all my friends for sticking by me and of course my family for always being there xxx


Sunday, 13 April 2014

My first trip to Manchester in 2014!

Early January I got a text from mufc saying congratulations you have tickets for the capital one cup v Sunderland! Hurray!

So I rang my friend mark, booked the hotel and we was ready! I met mark at Piccadilly as always me from my Birmingham train and him from his Yorkshire train. We got into a taxi off to the hotel. Unfortunately our room wasn't ready so we left our luggage and went into Manchester. We visited the football museum which was good to visit and I really enjoyed it, although the lift wasn't for me!!

The hotel rang to say the room was ready so off we went back. It was marks first visit to the Lowry and I think he enjoyed it! We chilled out for a bit before getting some food, you crnt best room service it's super yummy! We then got ready for the game, now as I'm use to winter games I wrapped up warm but I forgot my blanket yet again!

The game was one I won't forget in a hurray, it went to extra time with a late strike from Chica then penalties. Unfortunately united lost and we then had to leg it for a taxi back to hotel! We wasn't very happy but at least a friendly taxi driver!

Over all a fantastic time in Manchester and it's always lovely to catch up with my friend and my football companion, here's to more games :)

Xx