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!!!

XX

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 :)

XX

Professional drama queen.

OH MY GOD HELP ME I'M IN AGONY I FEEL LIKE I'M DYING AHHHHHHHHH!!
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
XX

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.

XX

Ignorance is BLISS.

First of all I apologise for the rubbish pictures, I had to drag my fiancé 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!! 

XX

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! 

XX

Give me strength?

I'd be lying if I told you I'm strong enough to handle this.
But I let myself think I am.
It still bothers me that people ALWAYS stare at my walking stick. When people ask me about it they always assume I've injured myself. It's so frustrating trying to explain whats up with me, it's so difficult to put into words. But I desperately want to be able to just tell people, I HATE that it's so hard to explain. I've now resorted to replying with "just read my blog", if they don't read it then they obviously aren't that bothered.
I feel like I'm being torn into two people, the Brave Face and the Weak Moaner. I'm constantly battling between them. This is my life and I refuse to let fibro take over it but sometimes I can't help it. I don't want the people around me to see me winging all the time. Is it weaker of me to just give in and tell people I'm feeling better or to tell them how I really feel if I feel worse.
The truth at the moment is I feel like rubbish!! The kind of rubbish that builds up inside like a shaken up bottle of lemonade. I have been working so hard doing exercises to build up my strength to be able to walk properly again and I am doing well, my walking and my strength has improved so much. But I'm tired, not in the way that you would normally be after exercise. I'm tired of having to try so hard to get back to 'normal'. Every ounce of my strength is being poured into exercise, I feel like I have let myself become weaker.
So my current goal now is to focus on finding a way to let Brave Face and Weak Moaner become friends. Because I am pretty good at being either, I just need to be both. Blogging is helping me get my thoughts in order and express them without feeling like I'm whining to everyone. The response I have received is incredible.
I will write soon about my medication and pain relief :)

Thank you, everyone, for the huge amount of support you have given me. I appreciate so much, from the bottom of my heart, I really do.
Big smiles :)

XX