Thursday, 23 October 2014

Appointments appointments and more appointments!

Hello!!

So I havnt really been blogging much recently because I've been sick or busy, what a mix ah?! Well first off I've had well no one seems to know but I've been literally falling asleep unexpedictly! I'm tired too I mean when did I start falling asleep at midnight lol! I don't enjoy sleeping because of staying in one position my joints really hurt in the morning! So doctors ain't really sure what's going on there.

I've been having a lot of appointments recently here's a run down, some exciting news too!!

Counselling

So many of you know I've been having some grief counselling to help me to deal with the loss of my mum I know it's over six years ago but it still hurts, I miss her every day. So I have been seeing a lady who's been helping me. We are coming to the end of my session now and not really sure what next I'm considering having private session to really get a handle on these feelings. But not due to finish until December so we will have to wait and see!

Hands

So I've also been seeing a lovely lady at one of the local hospitals and I swear she's a miracle worker! I've been seeing her for a while now and it's really helping me. I have splits to wear which are a little uncomfortable but they are working for me. My right hand which was the better of the two has improved with my one finger now going back straight which it wasn't before! My left hand and the worse has had a good improvement with a cople of degrees better in two fingers.

Physio

I've been seeing a new physio too she's really good! I've been doing many different exercises including standing with bars, swaying (LOL) and ball work and at home I have exercises to do daily. They have been really good and we are both pleased my one knee, my best knee! Has got a little worse but it has been flaring pretty badly! However my right knee that's "stuck" has moved a massive 10 degrees which is a massive achievement for all my team!

I also have many other appointments it's all fun and games! His week alone as of Thursday I've had 7 appointments and another couple Togo tomorrow!!! Lol I love being busy but it certainly takes it out of you but I'm working really hard to get my self back to dancing!!

On a final note of this blog, I recently passed my diploma in tourism management which I've been doing for a few months to fill a bit of time :)

Xx

Monday, 20 October 2014

Gary has returned!

A little while a go my friend Gary posted about his journey with arthritis ( PsA) and how he was training to climb killi well he has now returned and I asked him to write a piece about his trip as I know my readers like to see the whole story :) So thank you Gary and congratulations again YOU DID IT!

I've never liked travelling alone, it really is out of my comfort zone.
On the 15th August 2014, I found myself on the National Express heading for Heathrow. Although I've travelled to Heathrow on the coach previously, this was this first time on my own, once I got to Heathrow I'd have to find Terminal Three for the flight to Kilimanjaro International Airport.
I arrived at the airport in plenty of time, and to my surprise I found terminal three quite easily. I sat outside and started eating some sandwiches.
The trip to Kilimanjaro was organised by Discovery Adventure, an organisation which has been organising and running such adventure trips/holidays for 20 years. Discovery Adventure had the vision to organise a facebook page for this trip, so most people going on this adventure had met via this social media already.
The first person I met at the airport was Laura, a very charismatic young lady, then a few others who were going on the trip then turned up. The first hurdle crossed, I was in the right place at the airport!
The flight was pretty uneventful, the transfer at Addis Ababa airport was boring, hanging around for several hours before getting the connecting flight to Kilimanjaro International Airport. The first view of Kilimanjaro and its sister mountain was when we were coming in to land!
The first night was spent in a Hotel, the following day was the first day of the climb, a trip by minibus and 4x4 to Machamp gate, at the bottom of the climb.
The first day hiking was through the rainforest which surrounds the mountain. First time in a rainforest and the first time to climb over 3,000ft. The rainforest seemed very much like any other woodland except with some vines!!!  The first nights camp was just above the rainforest, first night under canvas for at least 30 years, and not a good experience, the two man tent was had a rectangular floor area, and we'd managed to lay along the shortest sides. In addition, I was laying on two large stones which was sticking out of the ground, needless to say, I didn't get much sleep that night.
The second day's hiking wasn't as easy as the first day's. A combination of lack of sleep and altitude was having a real affect on me. I can remember feeling rotten, and at one stage at 4,300 metres I vomited, better out than in they say! Others in the group were also suffering the effects of the altitude. That night we had a talk by the trips doctor, he told us what happens with altitude, the fact that the body can't get rid of carbon dioxide except by passing it out via the kidneys, therefore you pee a lot more, hence the importance of keeping yourself hydrated. The guides has a saying, that they kept repeating "More Fire More Water" followed by "More Water, More Fire!"
The second nights camping was more enjoyable, we were well above the tree-line, at this altitude there was little vegetation, very dusty, but this did mean, that the porters who took the equipment ahead of us, could clear the ground of rocks under the tents.
The next few days hiking were a blur, probably the most remembered part of the trip during these days was having to get up out of the tent at night and having to go for a pee! One night I think I got up and out 12 times, which was a bit of an experience, firstly because of the cold, -5°C, and if you are sleeping in a four seasons sleeping bag, you sleep with very little on, just a pair of boxers! The idea being that your warmth warms up the sleeping bag, if you sleep with clothes on, then the sleeping bag is cold, and so are you!
So getting back to having to go out for a pee in the middle of the night in -5°C; let's say it was an experience, unzipping your sleeping bag was bad enough, unzipping the tent lets all the cold air in! Then putting your boots on, laces undone! Getting out and getting away from the tent to have a pee was freezing, standing there, paying a call of nature, just in a pair of boots, boxer shorts and a head torch!
Nights in Africa, just 3° South of the equator, are the same length as the days, around 12 hours, all year round. Sun rise was around 6:35 and set around 6:35 in the evening. Since at these altitudes you are above the clouds, the night sky is amazingly clear; the night sky is full of stars!  For the first time I could clearly see the Milky Way in the night sky! I couldn't make out many constellations, nothing was clear with all the stars present in the sky, it very much masked the stars which you expect tosee in the nights sky! In addition to them stars being in a "different " place in the night sky!
Day four of the trek was tiring; that night I went to be at 7:45 in the evening, after having food and filling my water bottles up. This was the night before the ascent to the summit. Some 4¼ hours later we were being woken up, to get ready for the ascent; the goal being that we would reach the summit around 9am.  The group set out at 1am with head torches on, sunrise was 5½ hours away. That days hike was a blur, some people dropped out at this stage due to illness (D&V had been going around the camp). You didn't have a grip on who was still in the party and who wasn't. I can remember seeing the sunrise that day, then we were fast approaching the summit; the last bit of the hike was overscree. I was fading fast! One of the porters grabbed my hand and lead me onwards and upwards...
The next thing I remember was approaching Stella Point, at this stage I was shattered. I took my bag off and sat down, and started falling asleep! I was woken with a kick from the porter (Shadrach) "get up!"
Then we were asked if we wanted to go onto Uhura Peak, so I did, it was hard going, just walking a few steps before stopping to catch my breath, then a few more steps before stopping again...
I did reach Uhura Peak, just about! I was hoping to feel better, but the altitude was really telling on me, Uhura Peak is some 5896mtrs above sea level, roughly 3½ miles up!
Walking back from the peak, my hands began to tingle! This was a sure sign of altitude sickness, at this stage, Shadrach lead me rather quickly back to Stella Point. My head was spinning at this stage. Shadrach called over another porter, and they rushed me down the mountain at lightning speed, with a hand under each arm. Within a hour or so I was down in Barafu Camp, at 4,600 mtrs. Needless to say, I was the first one back in the camp who'd made it to the summit! The rest of that morning, I slept in my clothes that I'd been on the mountain in.  The day wasn't over after some food, we had a decent down to Millennium camp, at some 3,000 mtrs above sea-level.
The last day on the mountain was walking through the rainforest; I'd picked up one injury during this trip, spraining my elbow when I turned over at night in my sleeping bag. During this last day, I was to pick up another injury when I slipped and fell and twisted my right hip, which is the joint which is most affected by my Psoriatic Arthritis. The path through the rainforest is very slippery and very muddy, and I managed to go arse over tit on this, twisting my right hip and bending one of my new walking poles in the process. I picked myself up and continued to walk.
That evening and the following day I really felt the extent of the injury to both my elbow and to my hip! We (the group) went out to Moshi, walked around to a few shops and ending our excursion in the Coffee Union, afarmers' co-operative, rather nice coffee it was too. I had real difficulty getting myself off the chair due to my hip, and injury that was to last for a month.
There's an estimated 25,000 people climb Kilimanjaro each year, of which between eight and ten people die. So, if you go up Kilimanjaro there's a One in 2,500 chance of dying. Another amazing fact is that the life expectancy in Tanzania is a mere 44 years, mainly due to AIDS. I was taken aback to see one of the shops on one of the streets made and sold nothing but coffins.



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