Thursday, 28 April 2011

Hello - I'm Here!

Ok, today has been such a frustrating day that I want to scream into my pillow and then rip it apart! Sounds harsh I know but at least by doing this I might get noticed more.

What started out as a innocent routine food shopping trip (routine as in once a month when I have the energy for it) turned into me almost getting killed, literally. I was walking through the aisles of a well known supermarket here in the UK, with my husband and trusty walking stick in one hand and the other hand free to grab anything and everything off the shelves when I started to realise that no-one had noticed that my walking stick was visable and they decided to push me out of the way regardless. One woman almost ran her trolley into me as she was too busy looking at different types of eggs. They are eggs woman, doesn't matter if they are free range or not, they still come out of a chicken's bottom regardless! Would someone run a trolley into a person who was in a wheelchair? - No because people see wheelchair users and go out of their way to accommodate them and respect the fact that they are disabled. People see oldtimers with walking sticks and again, people react in a respectful way, even to people who are on crutches and people with pushchairs, (unfortunately pushing my son in his pushchair has got too much at times). But a 30 year old woman with a walking stick - different story. She doesn't look ill so she can't really be ill, she doesn't have a cast or anything so nothing is broken, we'll just ram our trollies into her and kick her stick out from under her - she won't care. 

Then there was the car park. Unfortunately, I haven't been able to get a lovely shiny Blue Badge yet so parking in disabled spaces is a no go and some idiot with no children whatsoever in his flashy sports car had just taken up the last parent/child place so my husband had to park quite a fair distance from the shop entrance and carry our 15 month old son to the trolley park whilst I limp along with my stick. Getting into the supermarket was fine, getting out of it was not. Trolley loaded, my wonderful hubby speeded back to the car to load it up then come back for me but stupidly I thought, what the hell, I'll just walk slowly to the car. Obviously people couldn't see me walking slowly, with a silver/grey aluminium walking stick, blue jeans and white, yes WHITE tee-shirt (its not like you could miss me) so this enabled one irate driver to almost turn into me whilst he was looking the other way. Here's a tip people - generally don't turn into a corner whilst looking in the opposite direction, stop first and asses BOTH sides. (and this is coming from someone who isn't allowed to drive anymore)

Then to top it all off, here I was again, after several deep breaths, walking, keeping to one side in a one-way lane, making sure there were no cars reversing out of their parking bays when another idiot decided to turn in the lane heading in the wrong direction, swerve to an empty space and then reverse out of it again literally inches from where I was walking and he looked annoyed that I was walking so close and he had to wait until I had passed him for him to continue, and believe me that took a while. If I could walk faster I would but I can't and its people like these today that just ignore the fact that any joe blogs can be ill and not look it. 

For once throughout my illness, today I felt like an inconvienience and I hated it. I'm a nice person, worthy of people's attention and respect that is shown to any disabled person because even if we don't have the guide dog beside us or the use of a wheel chair (I know that a lot of ME sufferers do have a chair and I respect that fact), like it or not CFS/ME sufferers to a point are disabled. We have a dibilitating illness that affects our daily lives even if its just from an hour of sever fatigue to weeks not being able to move, its dibilitating, and its frustrating and I applaud all of us, whether you are bedbound, wheelchair bound, or housebound, or even have a minor degree of suffering, I applaud us all for keeping strong, not letting our illness take the simple things in life such as food shopping, away from us. 

Stay strong Spoonies - (hehe, I love that term).

Tuesday, 26 April 2011

Thank you

Ok, so I've been ranting on a bit about how crap things are right now with having ME but there are positives in my life for which I'm extremely grateful for.

Firstly my husband. Without him I wouldn't be the person I am now. He saved me from being alone and saved me from being a large brick wall with no doors or windows and no way of getting through. He is kind, considerate, handsome (bloody gorgeous in fact), loving, generous, he is my husband, best friend and lover all thrown into one 6'6" package. I don't know what I would do without him, especially when the days are so bad with the pain and the tiredness. He is my rock and I am so lucky to have found him.

Then there are my children, three little scamps that if it weren't for them I might have given up by now. They can be trying at times but they know that their mummy isn't well and I'm so proud of the way they are dealing with this situation. They are strong, they have learn't to adapt and although deep down they are disappointed that Mummy isn't able to play games or go for a bike ride with them or just generally spent activity time with them, they don't show it. I love them dearly and wouldn't change them for the world.

Then there are my friends and family that have shown so much support I applaud them for standing by what I feel is a high maintenance, low self-esteem person that feels incompetent at everything she does.

Its a combination of all these people above that help me get through the day and help me deal with having this crappy illness, so its to them I thank.

Thank you, with all my heart, soul and rattly bones xxxxx

Saturday, 23 April 2011

When Brain and Body don't get along

Sorry I haven't blogged for a few days, had it rough. My brain and my body had a severe falling out and now I'm stuck in the middle of what feels like World War Three!

It started on a Thursday, woke up feeling fine. Was chuffed that the sun was out, it wasn't too hot and there was a nice breeze. Decided me and the family should stock up our food cupboards so off we go. Shopping went fine, we usually go round slowly anyway so I don't tire quickly, got everything we needed and came home. That's when disaster struck! My brain wanted to carry on, have a nice BBQ with the family and enjoy the rest of the day. My body had other ideas. At this point they were just quibbling, getting at each other, nothing major and I could handle it. I came to a compromise. I would enjoy the family BBQ but not do anything strenuous. For the time being things were amicable and peace reigned.

Friday - the war began. My brain, still ever the enthusiast wanted to do all sorts but my body was having none of it. In fact, it fought back with such a ferocity that I had no choice to pitch myself on the sofa for the day. I couldn't even drink a glass of juice without the shakes and trembles and after the sip was make, I was knackered! My body kept throwing pain after pain after pain at me, in my legs, my feet, my shoulders, my fingers, my wrists, anywhere where bone met bone and muscle met muscle. So my brain decided to retaliate by throwing mixed messages at my body. The twitches began, the restlessness and the ultimate fatigue. It was like they were proving who had the worst they could throw at me. Also, my brain decided that intelligence wasn't on the menu either so Brain Fog set in. Once minute you are are com pus mentas and the next you can't even remember what happened three seconds ago, forget what you are talking about mid-sentence and start getting all your words mixed up. It was Hell, not going to lie, it was worse than Hell. Having to keep standing up to keep the circulation going and then sitting down zapped any amount of energy I had out of me. I was done. I gave in and a truce was established.

War or no war, yesterday was a nightmare, a nightmare that I know will repeat itself again and again and again. At least brain and body are letting me do the odd thing today like the blog but as always, enjoying too much of a good thing and I will be punished. Fingers hurt, typing slowing down, need to rest.

Wednesday, 20 April 2011

Weight Loss - yeah right!

Apologies if this offends.......

I read a glossy magazine today and I wish I hadn't. The amount of pages dedicated to losing weight, being the perfect size 8 and celebrities saying they hate their bodies and their size really gets to me.

Firstly, boo hoo! I know that's harsh but I'm really fed up with this stereotype that all women should be thin and lean and not a wrinkle or crinkle in sight. Being pressured into selecting a diet that works, which lets face it, when it comes down to it, no real food is involved! Then there's the exercise regime. Please! Who has enough time during the day to run 80 odd miles a blummin' day?! I certainly don't besides, I don't have the energy to put the trainers on! Don't get me wrong, I'm not against all this per say, in fact if truth be told, I'm rather jealous of the size 8 figure and the perfect skin and gorgeous clothes that don't show the lumps and bumps but in the real world CFS/ME sufferers don't have this type of luxury.

Another issue that's got me a little riled up is Victoria Beckham. Don't get me wrong, I am pleased for her that she's finally getting the little girl she's always wanted and I'm only going by what the tabloids and magazines are saying but the latest crisis in her life is that she says she looks hideous being pregnant, (worried that Kate Middleton is going to outshine her at the Royal Wedding!!!!!) and she's worried she's not going to lose the baby weight after the bambino is born. This is a regular thing with pregnant celebs but its also a concern for us 'normal' women but in my case, (and I'm sure I'm not the only one here) I became ill after having my son.

I put on five stone during my pregnancy and shortly after my son was born I was diagnosed. Therefore, the exercise and loosing the baby weight isn't an option! I feel and look hideous the size I am, I've never been this big and its killing me being trapped in my body at the moment. Not only is it failing, its expanding. I've tried slimming tablets, cutting out carbs and cutting back on chocolate and calorie rich foods but I'm still eating food and not exercising at the end of the day. I'm putting the calories on and not burning them off. My son is now 15 months old and honestly, I still look six months pregnant. In fact, a woman commented on me having another baby so soon after having my son! 

So please VB and other pregnant celebs worried about shredding the baby weight, please stop and think about the people who have been blessed with their babies but are tormented being trapped in bodies that don't work properly and are getting too heavy to carry around. In fact, the heavier I am, the tireder I become.

I want my body back.

Tuesday, 19 April 2011

There is only so much rest one can take!

OK, I don't want to sound ungrateful here or try to make out I'm feeling sorry for myself but I've always been an active person. I've always enjoyed working, enjoying outdoor sports such as rollerblading and cycling with my children and have been known to do the odd walk or two. I've danced in my living room to no end whilst doing the chores and even when not doing chores, I've had the curtains closed and the music up loud and danced until my heart's content. Now however, those things are impossible. The very thought of getting my blades on right now fills me with dread as I know I will be suffering for it afterwards, besides, I don't have the energy to put them on in the first place! But when you are placed in a situation where rest is a big part of surviving everyday it can get a little tiresome. 

There have been days in the past where I have thought to myself, "god, I would love a day to rest, put my feet up, read a little, watch trashy movies on TV and not even get dressed". Well, in the present, that is exactly what my days are like. Day in and day out. When you've gone from being really energetic to doing practically nothing it can take its toll. I may not speak for everyone but I'm getting tired of the same four walls in my living room, getting very fed up with the state of the house and even, (hate to admit this to myself) feel very jealous of my children for being able to go out into the sunshine and ride their bikes, play dizzy dinosaurs in the garden and go out and walk the dogs.

Don't get me wrong, I've been out. Done the odd bit of shopping and walked a little but I've had my trusty walking stick with me to lean on and the entire family asking me constantly if I'm ok, can I manage. I know they love me and want to take care of me but I know my limits and if I wasn't ok, I'd tell them. Believe me, its easier to tell them then to hide it, you'll only make it worse for yourself.

But when I get home, its straight back onto the sofa for me, in my comfy sweats, a book by my side and the TV remote in my hand. When I'm able to have complete peace and quiet (not easy with a 1year old, 5 year old and 11 year old) to completely rest I end up kicking myself thinking about all the things that need doing. The TV needs dusting or the dishes need putting into the dishwasher. If I'm completely honest, I'm not sure if its the actual resting that drives me insane or the thinking of what needs doing while I'm resting that's driving me to the brink of screaming, knowing that if I do those odd little jobs I'll feel worse physically. So, the big question is - do I feel worse physically and do the jobs and feel guilty for not resting or do I ignore the jobs, rest and feel worse mentally and feel guilty for not doing the jobs?

I just can't decide :-(

Sunday, 17 April 2011

The Weather

Ok, last post I got a little bit worked up, which doesn't help my condition so today I'm going to try and keep calm afterall I'm British and as the saying goes - "We carry on". Not sure who came up with that one but I remember an episode (a very good episode infact) of Doctor Who that that saying was used over an over again. I suppose it does make sense, we have in history always got on with and won over every crisis we've faced. (Lets just hope that the current crisis of which is named The Government, can be won over - not too sure at this point considering the state of my bank account but positive thoughts all round.)

Ok, lets get back to the topic at hand - I do tend to go off on a tangent but stay with me, I get back too it eventually. Here I go again.....

The weather. It is said that the weather can affect how we feel on a daily basis and I have to say I agree. When the weather is at its worst (typical British weather), I feel bad, I don't want to make an effort and the cold seems to affect my illness as the pains are worse. When the weather is good, I seem to be able to make the effort, I feel better and I do more, that is until I've pushed myself to the limit, not rested inbetween activities and I'm right back to where I started from - either bedbound or sofa bound, walking stick by my side, painkillers on hand and a blanket of pure exhaustion laying over me. Why do I do it? Why do I push myself too hard when the sun is shining? I guess its because I don't want to face the summer having to watch my children play while I'm laid up suffering. But that's what ME/CFS sufferers face every day. Each day, they don't know how they are going to feel when they wake up and once they are awake, they either feel ok, not brilliant but ok or they feel horrendous. 

A good day is when you can walk and do simple tasks but still don't feel human. I want to be human. I want to spend time with my kids without them having to sit there watching me suffer. I don't want to miss out on their lives but I am. Having to plan ahead your activites such as a family day out - rest the day before - rest the day after and possibly the day after that depending on the activity you enjoyed with your family, but don't forget, you will be punished for enjoying your day, you will be in pain, you won't be able to walk and you will be so tired that all you want to do is sleep until you feel like you again. I can't remember what feeling like me is like, its been that long. I guess haveing ME/CFS is me now and as I'm British, I'll carry on.

Saturday, 16 April 2011

I'm Not Lazy - I Have ME

No-one can see the future, despite all these celebrity fortune tellers and psychics listed in magazines and leaflets, no-one can see how your future will pan out. I wish they could, they could have told me I was going to be ill instead of having to find out after enormous amounts of testing and disbelief and the accusations that I was making my symptoms up, the discrimination from my peers and the self-loathing I had for myself for feeling the way I did. After all that time, it was nice to finally have the official diagnosis and understanding from a specialist that I have M.E.

Myalgic Encephalopathy or as it is more commonly known as Chronic Fatigue Syndrome, is a REAL illness with REAL symptoms, NOT something people say they have to get out of work or make excuses for being lazy. Those who do use it as an excuse should walk a day in the shoes of a real sufferer and find out for themselves how painful, disorientating, debilitating and what a real struggle to get through each day it is

I have decided to use this blog (and endeavour to keep it up) as a way of releasing some of the stress that gets all pent up inside when I'm having a bad day so if you are really into reading nonsense then this is the right stuff for you, although some may not be pretty and some content may not be suitable for fragile readers as I have been known to swear, particularly when it comes to my husband's employers - HM FORCES. Don't get me wrong, I am very proud of what my husband does and very proud to be associated with the sacrifices and dedication each soldier has but being married to a soldier is hard work. Army wives are known as "extensions to the house" and "soldier's baggage" and do not seem to have any rights. So when my husband told his boss that I was ill and gave him directly my specialists report and description of my illness, it was dismissed and my husband got told it was all in my head. AARRRGGGHHHH It Is Not In My Head!!!!!!!

Should go, got myself all worked up, back soon.....