Thursday, 30 October 2014

Where do I even start?!

Well hello friends, I know it has been far too long. An awful lot has happened with my fibro since I last wrote. There were some low lows and many high highs but it seems, since the cold winter has set in, I'm on my way into a low low again. I had a bad winter last year but around Easter time things really changed. I started with a new physio and mixed with a successful course of CBT, I was improving at lightening speed. I said goodbye to my stick and hello to 'normal life'. I actually thought I had got to a point where I was 'better'. I was off all medication and managing to exercise ALL THE TIME!! I still had most of my symptoms but they were just massively reduced. I still had flare ups but just not as often. 
I know, it sounds like heaven doesn't it?! Well it only lasted almost four months. And now I feel life fibromyalgia has come crashing back. Breaking and entering. Torturing my poor body. Tearing away all my hard work in building my strength back up. I feel as though I am being so over dramatic but that is actually what it feels like. Does it make me weak to admit that? 
I so hope I am strong enough to rise above it. I just need to listen to my body and be kind to myself. 
So much easier said than done isn't it guys :( 
I am going to try to write more often now. And hopefully that will keep my strength up. 

Friday, 29 November 2013

Two steps forward, one step back.

There is a mountain of thoughts pushed to one side of my mind that are in desperate need of sifting through.
The problem is I'm far too scared to do it.
I have been incredibly up and down recently and I'm doing everything I can to avoid the downs!
Usually when I write my blog I feel as though I have off loaded and my confidence is boosted, however at the moment I don't feel the confidence at all.
It is much easier to talk about what is happening on the outside than it is to talk about what is happening on the inside.
I just feel as though my strength has gone and I'm just rubbish at coping at the moment.
I am quite happy to just ignore everything but I know it will boil over soon enough. I am starting cognitive behavioural therapy in two weeks so that should hopefully help.

Pain wise, I've not been doing all that brilliantly either lately. However it hasn't been effecting how I walk so it's good knowing the physic has worked. I have been using hot water bottles to help soothe the pain.
I won't ever be able to explain how thankful I am for my fiancé and family's support.

Just keep swimming. Just keep swimming. Just keep swimming. Just keep swimming!!!


Thursday, 14 November 2013

A weight on my shoulders.

Blogging shouldn't be a chore but it really feels like it at the moment. I have had a really tough few weeks and although things are starting to look up now, I'm struggling to find the motivation to talk about it. I just need to keep positive. 
Turns out coming off my medication wasn't such a good idea so after going through what felt like hell and back, I am back on but only half the dose I was on before (Lyrica pregabalin 150mg). 
I am still here and I am doing good, I just can't bring myself to write about it at the moment. I will be back soon I promise :)


Tuesday, 22 October 2013

Professional drama queen.

Sorry, I just had to. Today has been a bit rubbish, I had physio this morning and it looks like I may have gone backwards a little since my last appointment and my new therapist isn't as good as the old one. The weather has had worse mood swings than I have and to top it all off I ruined tea :(
BUT... I have bought malteasers and popcorn ready for a pyjama day of films with my man tomorrow so all will be well. Also tomorrow will be the last day I will ever take pregabalin ever ever ever woooo! Then I have to wait two weeks until I next see my GP when we can discuss what to try next, I think I want to try amatryptaline as I've heard mostly good things about it but I'm still researching what I can so hopefully I don't end up on something as bad as lyrica. I can already tell the horrible side effects I did have calming down, my appetite is no where near as bad as it was and I feel far more alert and less foggy. However the withdrawal symptoms of weening off have been pretty annoying, my skin has been awfully itchy and I've been a million times more dramatic than usual (comedy inspired by my dad there!).
Yesterday was my first bike ride in a week and a half and I managed twice as far as usual so at least that's progress!!! I have been thinking about setting up some kind of fund raising for research into fibromyalgia but I have really been struggling on ideas for fund raising seen as theres no way I'll be throwing myself off the top of anything or running a marathon something like that. I was thinking maybe to try and build up my strength in cycling so I could do some kind of sponsored bike ride. Any other suggestions are most welcome as long as they are fibro friendly :D

Monday, 14 October 2013

Two steps forward, one step back.

Ok, I get it. Loud and clear. I cannot push myself as hard as I have done.
My immune system crashed and I got a bug, I spent a week fighting it and then a week recovering. I will still fight hard to get myself back on track but I have learnt my lesson too many times not to push myself over the edge. Rest does not make me weak, it just helps make me stronger. I feel like I've taken a load of punches recently, the slightest things seem to be bothering me more than they usually would. I have been spending all my time doing completely nothing and I really don't think it's good for me. I just want to hide until everything goes away.
Last week I made the decision to come off my medication (Pregabalin, Lyrica) because I HATE it and want to try something else. I have been on it since June, I got up to 300mg a day but it wasn't doing barely anything for my pain and I was suffering from pretty much all the side effects! I have gained 10kg, my hair was falling out like crazy, I sleep like all time time! And don't even get me started on what it does to 'fibro fog', sometimes I really have to think about whether I'm awake or dreaming!! I am sick of not feeling human anymore. Time has been slipping away from me recently and I blame Pregabalin for that. I am only half way through coming off and I haven't noticed much difference so far. I do feel more alert and my sleep is a lot more disturbed, I have also had a big problem with my skin hurting, this isn't a usual for me but it's just so sore to touch and feels bruised all the time but other than that there has been no change.
The other week when I had a bug was the first time I have been ill since I had norrovirus in January which is really what set my fibro off big time. Bugs are definitely a lot meaner on fibros! Every joint in my body ached when I got up in the morning and every muscle felt pulled by the time I was dragging myself to bed. To be honest I should be less shocked that it took me a week to recover. I feel like I experienced what it's like to be 80, I'm telling you, at 19, I am not ready for that! All hail flu jabs for pensioners!!
I will end here before I smash the laptop for hurting my legs. I promise you all I'll stop pushing too hard.
Big sighs and big smiles.


Thursday, 26 September 2013

Ignorance is BLISS.

First of all I apologise for the rubbish pictures, I had to drag my fiancĂ© off that new Fifa game to take them for me, so I'm lucky I got any! 
I also apologise it has taken me so long to show you my exercises but here they are.
I try to do them once a day but the length of time I spend can vary. Yesterday I managed half an hour of my pilates DVD and that was really intense! GO ME! Today, however, I had a physio appointment this morning so I really haven't felt like doing any. I just go with what my body allows. My pain has been some of the worst I've experienced recently but I seem to have had a sh*t load of motivation come from somewhere! My days currently consist of about half an hour of exercise in about 5-10 minute chunks spread between several naps. I have been sleeping for 9, sometimes 12 hours a night and I still have to nap during the day! I assume this is because I am doing so much exercise.

Because I have had to use a walking stick for the last 10 months, my whole body has been thrown out of place. My pelvis has tilted backwards so i have to do exercises to try to pull it forward again, which should help my posture. To do this I sit on the exercise ball and start by rocking my hips backward and forward, just to ease my hip movement. I then do foot lifts or if I can't manage that then I just go onto my toes. To keep my posture I use weights. I have found this is really helping improve my balance too!

To improve the range of movements in my legs, my physiotherapist suggested just rolling a football backward and forward. If I do it lead down I can squeeze my core muscles the same as in pilates. If I'm having a rough day and can't manage anything I bring the exercise ball into the living room and use it as a foot rest when I sit on the sofa so I can do a few rolls. This way I'm still getting the movement but its far more comfortable.

One thing I do regularly, just for 2 minutes at a time a few times a day, is put my weights (0.5kg each, its barely a weight but it works) on each foot and lift my toes. I focus on standing straight with my back flat against a wall but not leaning on it. I make sure my body is as straight as I can make it and then try to relax and concentrate on breathing. This is a really simple exercise and takes barely any effort really. My balance has improved an amazing amount since I started doing it. If I'm having a good day, I'll use an exercise ball and add squats. This hurst SO much though so I only manage 2 or 3 squats before I go crying to the biscuit jar!

I get frustrated with myself when I can't do the things I used to be able to do! I used to be able to get my nose to my toes like this :(. I am slowly trying to get my body back to how it was. I feel like if I can get my body moving again I will feel a lot better. Its taking every ounce of my energy but I may as well go with it while I can.

I am going to the bike shop later to see if I can get on one!! I have been using the exercise bike at the gym a little but its quite difficult to get there and especially back! so I am wanting to get a bike of my own, I will feel a little like I can get out more too. For now I am going to get a stand so I can use it in the living room (and watch telly at the same time haha!) just until I get a little fitter. 
All this pushing is having a big impact on my pain as I said. I have had a lot of pain in my ribs and I constantly feel like I'm not getting enough air in when I breathe. I know its just because my body is so unhealthy but I am listening to my body and pacing myself. I just feel like I need to make the most of this magical motivation whilst I have it!! I have started taking vitamin B12 and I think this may be the magic juice! 
I am trying to get my medication changed at the moment because I hate Pregabalin. I will write when I have got it all sorted. In the mean time I will continue taking magic juice and hopefully continue exercising!! 


Saturday, 21 September 2013

Optimism, Exercise, Hard work and Physiotherapy, a recipe for a massive success or a recipe for a massive flare?

The past couple of weeks I have been forcing my body through as much yoga as it could possibly manage. I thought if I could keep pushing through the pain I could make it go away. WRONG! Not only did the pain completely and utterly sky rocket, I also found I was doing a fair bit of damage to my trigger points. I learnt that pushing my poorly body as hard as an olympic athlete was not a wise idea. 
About five weeks ago, at my routine GP appointment, I pointed out a very painful lump that had appeared on my rib. I had no idea I had gone as far as spraining a rib in all this body torture! I had gone from being incredibly immobile to pushing myself through expert yoga in the space of about a week and a half. 
The positives however were amazing. It felt so good to feel my muscles again. The difference it made to my movement was fab. I was told to ease off the 24/7 stretching and slowly develop it instead. After a couple of 'couch days', I started doing 10-20 minutes of easy yoga stretches every morning. 
Two weeks later, I started physio. Having the guidance from a physiotherapist gives me a lot more confidence in what I am doing (although my rib is still sprained, I'm far less scared of doing it again!!). I have started doing Pilates exercises to strengthen my core muscles as they are practically non existent thanks to using a walking stick for the last 6 months. After just a week I am already seeing the difference it's making to my posture, and I know I'm not doing any damage to my trigger points. 
I have kitted myself out with equipment and set up a space in my spare room dedicated to exercise. I am trying to do 15 minutes in the morning and 15 minutes in the afternoon each day. 

Over the next week I will try to post pictures of the kind of exercises I do, so fibros and non-fibros can try them! I am still in the process of learning from my body what I can and can't do but I am willing to try everything I can. My pain at the moment is pretty high so bare with me!