Moving home…

…I moved home today.  Admittedly, it was a little move, only 13 miles, but when you factor in a 60 hour working week and having FM…oh my deity I learnt some lessons.

As I have previously blogged, I was brought up army and if there is one thing army families know how to do, it is to move. Up and out in 24 hours in some cases and we just got on with it.

On civvy street, I still follow what I learned growing up army, but fm..that monkey on my back, just has to add it’s tuppenny worth. It has taken me a grand total of 6 weeks to arrange a new home, pack and prepare. (I made the fatal mistake of not resting up yesterday but instead still did a full days work and then packed more when I got in..this after the MAMMOTH packing session I had on Wednesday night and due to being wound up on getting things done, did not sleep either)

Sooooooooooooo, I was up at 6am to do some final preperations and the removals men were amazing, it took them an hour to load, 20 minutes to get to my new house and then an hour to offload so they were done at 11.30am. WIN!

At 11, the guys came to fix the locks on the front door and the Broadband guy arrived at 1 so by 1.30pm, I was finally alone to take it all in. I had a blinding cup of tea!!!

I unpacked quite a bit throughout the day, but I am utterly shredded, there is nothing left of me, and therefore, I think I will go to my bed and ponder on reporting my tale of moving tomorrow…mmmm bed, sleep… is rocking it!

I go on to a couple of sites which provide support for fibromites like me and they are absolutely great. Not only are they empowering, but I have met some great friends and received an amazing amount of support as well as being able to give support myself.

Through my favourite forum, I have been told about which is one ducks crusade to raise awareness of FM/CFS/ME across the world. Even celebrities are getting involved!;

So have a looksee if you like, it is a brilliant site xxxx

Smodcast Network and Plus One #14

Wow…now my friends know that I am a massive fan of the Smodcast network and I was just catching up today and listening to “Plus One” #14 (Kevin Smith and Jennifer Schwalbach) and Fibromyalgia was mentioned as an example of something of severity. Now I know it was only being used as an example, but it is amazing that two people I respect obviously understand how brutal the condition that I have is. It is so refreshing to hear it as a reference as opposed to something that people know nothing about and subsequently dismiss as irrelevant 

It really made my day

If you want a really decent set of podcasts to listen to, seriously, try the smodcast network (but beware of the swears yo!) There is something for everybody there whether you are a film buff, enjoy comedy or whatever, it’s just mint;

Try it, I am sure you will like it 😀

Wow..what a year so far..

Bloody hell, if it is not one thing, it’s another!! I can certainly say that whilst my life is restricted in many ways, it’s certainly not boring by any stretch of the imagination.  

Soooo, let me review the events in the first two months of the year;

  • I find out I have to move home. The negative is the faff on that moving is and the challenges that getting it all sorted actually pose for me. The positive is that I will be closer to work and have my own space again. It’s another new beginning
  • I have to have an operation on the 14th March. The negative is that the timing along with the move is not the best, but the positive is that I get this huffing great lipoma removed from my back/ under my shoulderblade so it should ease off the pain it causes. Whoop! Negative – it is going to be an arse to heal. Positive, mam is going to help me look after the wound
  • I found out a certain energy company has put a default on my credit file in error and it has been there for the past two and a half years! Negative – tons of e-mails and correspondence back and forth. Positive – The ombudsman is taking my case and my OCD has again paid off as I had all of the documentation from when I cancelled said companies service and also when I first dealt with their mistake..
  • Further to the above problem, a certain credit reference agency has been reporting that I lived at an address that I moved from 3 years ago, despite the fact that they knew that I had moved and provided that information to the energy company, and yet did not update my record, saying that it was my responsibility to do so??? What the hell??? Negative – I have to clarify my complaint to them. Positive – I will get it sorted
  • Rheumatologist appointment was absolutely shite. It was just a repeat of the last one four months previously and in short, he just said there was nothing more that could be done for me apart from pain management and off you go. GR. Negative – The appointment really brought me down. Positive – I have educated myself about FM and will continue to try and help myself. I WILL focus on what I CAN do and I will not lament what I cannot do. The other positive is that I have 2 great doctors and a brilliant nurse practitioner at my local surgery who are brilliant and understanding and I know that I can rely on them to listen in case I need a medicines review or have any problems
  • I was involved in a car crash on Tuesday and not only do I have whiplash, my trapezius along with the muscle down the right side of my spine is in spasm. Negative – OWOWOWOWOWW! Positive – Physio to get sorted and a claim as the crash was the other parties fault
Soooooo, a lot of challenges in a very short space of time and I am hoping that by the end of March, everything will settle down.

Days of the week – As I see them

I adore humpday, it is one of the best days of the week. For those of you not familoiar with the term, it goes like this; If you imagine that Monday is at the bottom of the hill, the weekend looks soooooo far away and it is an uphaill struggle. Tuesday is pretty much neither here nor there and has no real identity as days go lol. Anyhoo, you get to Wednesday at midday and it is all downhill to the weekend, ergo, humpday. 
So this led me to have a little to and fro with a friend on FB and assign further identities to the days of the week (it was a slow news week (”,) )
Monday = Moanday: Just get it out of your system. Nobody likes Monday’s, so have a 5 year old style tantrum to vent all that bad karma out of your spleen and set yourself up to use Monday as a springboard to the rest of the week
Tuesday = Tootday: Ok, so we have established that in my opinion, Tuesdays have no identity apart from being a blah blah blah bleh day. I have therefore decided to declare “toot” to as many people as possible on this day. The main victims being my colleagues at work. (I already get odd looks on the bus so have decided to abstain from saying toot in that scenario)
Wednesday = Humpday: We shall leave the mighty humpday as it is as it gets me through the week (”,)
Thursday = Fursday: this is the day where you reward yourself for gettinng this far and take the opportunity to snuggle up in something (anything?) lovely and soft and just find real comfort for a couple of hours
Friday = Friteday or Fryday: Depending on your inclination and whether you are minxy or a foody. If you are minxy, make this the day that you jump out on someone and say boo! Or even just pretend to be a rather lacksadaisical bear (or tiger) and just say “Gr” with supporting claw hand motion thing…Fryday for foodies is self-explanatory
I am still contemplating on the re-identification of the two glorious days of the weekend and as it stands, I have only re-named Sunday snugday as it is a lovely old sleepy day, however, this does detract from the necessity to have adventures at least once a week so is currently under consultation
Yes, my perceptions may seem slightly unhinged, but perception is half the battle to whether you are going to be happy or sad on a given day, so I am going to stick with warping my own perceptions of reality at evry given opportunity
There is a time and a place for being sensible and all growed up, but nobody knows when you are acting like a complete juvenile in your imagination. Long may it remain (^_^)

Sooooooooo…this is why I am doing this

Oki. This blog is not going to be about me whining on about my life, or various challenges.

What it will be, is my way of finding solutions, overcoming any hurdles and making the most of every day.

So many of us get completely absorbed in our working life, family, home and we lose sight of what it is to truly live. I am not able to go out and start skydiving, and I do have to go to work every day to pay the bills, but there is so much more to life than the repetitive, monotony that is being a grownup.

I have had eighteen months of what can only be described as “challenges”. It all started when I prolapsed 2 discs in my back (still kept going to work), then 6 months later my hands started to seize up, the joints swelling and excrutiating pain. This moved on to pain in all of my joints and bones and a year later, I have a diagnosis of Fibromyalgia, further tests being done on my joints, tendons and ligaments, an arrhythmia for which I am going to have to have a portable heart monitor for 24 hours (already had the bloods done) and as of today, the routine op to remove a lump in my back has had to be referred to be done under a general anaesthetic as it is too big to remove under a local.

I always used to be so healthy, but in the past 18 months, it has all gone pear-shaped and if it has taught me anything, it is that life cannot be wasted. We take our health and well-being so much for granted that we work hard every day and focus on our day to day lives and worries whilst missing the main point. To “live”

I am really lucky though, as an army child, I was lucky enough to travel the world and see so many things. As a teenager, I moved out of home young and lived life to it’s fullest. Even through my twenties, I was surrounded by long-term friends that made the difficulties of that decade bearable and stuck by me even when I moved 300 miles to get away from the town in which I lived. I look back on all of that time and the wonderful times I had, and indeed, the serious adversities I overcame and I am grateful that I had the chance to really live. The last 5 years since I moved have passed by in a blur with some wonderful adventures, and yes, my friends are still there with a few more added for good measure.

However, the last 18 months have battered my health and as I said, I have had a wak up call in that I need to stop and re-assess how I live my life. I don’t want to stop working, and I sure as hell do not want to stop having adventures. I haven’t been out on adventures since May and this may be the result of a touch of cabin fever, but I see it as a way to re-focus and to re-build my life.

So, maybe you will read this and be interested, maybe not, but I am grateful if you have read it at all xx

This is what it is like to have Fibromyalgia

It is difficult to put into words what I go through each day, so here is a copy of a letter that was written for the purpose of letting others know what it is like;

by Claudia Marek

Here is my letter written to explain to family and friends what it’s like to have fibromyalgia. It won’t work miracles: it’s hard to understand our illness from the outside looking in.  But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own.  Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need.  The best time to do that is when you are not upset!

Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!)  If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don’t want you to think I’m making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too.  Look at the list of side effects and the few symptoms they help in return.  Even in the best studies those expensive compounds didn’t help over half the people who tried them.  No matter how happy the people in the pictures look, there’s still no miracle drug available.

There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel.  Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe.  You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck.  Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse.  Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake.  I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational.  I know I am, but I can’t help it when it’s happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.Link to the original letter