Tuesday, 22 April 2014

Realising just how much things change

It's been a while since I even logged into this site let alone looked at my blog. If someone had said to me a year ago that I would be writing these words, I would have thought them mad or at least incredibly hopeful. But here I am, writing about how much things have really changed.

It's hard to really know where to start since I don't really know myself at what point things changed. I guess it was just a gradual process where I eventually found myself being able to do slightly more, feeling like I had actually slept and not feeling as much pain. Don't get me wrong, I'm under no illusions that I'm cured but life is easier to manage, my body can take more abuse in the form of working and the gym. When a migraine sends me to bed or an infection knocks me for six, I do get that niggling fear in my head that it's starting again, that my life will just slip away into a mirade of pain and weakness.

But focus is now the key! When I feel not so great I know I have to stop because if I push it, the walking stick sitting covered in dust in the corner may need dusting off and I cannot think of anything worse than going back to those dark days.

After 9 and a half years, I am working almost full time with brilliant people in a job I love and I don't spend every night paying the toll of pain for it. Granted there are some days the back pain is still sickening and the headaches, blinding but you can't have everything and it's a compromise I will always be willing to make just to be in the land of the living again.

It probably helps that I get to see faces like this everyday...

This blog isn't about telling you how well things are going, I want it to be more about telling you guys that things do get better. Yes, it has taken a bloody long time for me, though not as long as some and unfortunately I don't have any answers on the medical front but just remember to never give up.

I've found it very hard to adjust to not checking my every step, every ounce of energy but a habit of 9 years is hard to break I guess. But here's to a new chapter, of moving on and staying well

If you have a good day, enjoy it! Your illness doesn't define you unless you allow it to. Just because the things you accomplish are little in comparison to other peoples, doesn't mean you should enjoy it any less. If anything those little things mean so much more.

And whilst I know it is hard, sometimes it is worth it to push some boundaries. We get so stuck in the mindset of can't, so much so that you never realise you can until you just try.

A few people have asked me recently what I did to get on this infamous road to recovery and if I'm being brutally honest, I haven't got a bloody clue! Just luck I guess. I have always pushed myself to the limit even when really ill so by rights my body should be the living embodiment of Hades but it's not and I have no reason for it. One thing I will say is I never gave up my life for the illness and I never will. If you let it beat you, it will win.

Quote of the day: 'It was time to start again. Learn to live and love again, dance in the rain instead of trying to hide my tears in it. The light was finally shining through the fog that had surrounded for so long. Smiling to herself, she started to dance'

Tuesday, 7 May 2013

M.E - that thing that can ruins lives

It's been a while since I posted here but since it's M.E awareness week next week I thought I'd write something now while I have time. If just one person reads this and learns something or changes their view of M.E, then it's worth it.

My nightmare started just over 8 years ago. After a severe bout of flu, I became very weak and constantly in pain. As a 14 year old, I should have been in school studying for my GCSEs but instead I was laid on the sofa with a headache so bad, the sick bucket was my companion. Pain racked my already weakened body. There was nowhere the pain didn't affect, it hurt to walk, it hurt to cough, some days it even hurt to breathe. The pain left me exhausted and yet I couldn't sleep. Fatigue came in waves. Walking to the toilet left me feeling like I had run a marathon and yet having a rest did nothing to help.

Doctors didn't believe there was anything wrong with me other than slight anaemia. I saw a number of doctors before seeing one who finally believed me and referred me.

I have questioned my sanity so many times over the years! When doctors asked me to see psychiatrists; when people have commented on the fact that I don't look ill.
Even last night after long years of pain, sleepless nights, heart palpatations, headaches, I still question my sanity!

It's hard not to wonder if maybe it is all a figment of my imagination when you have so many people telling you it's not real, so many 'specialists' saying that since no blood test shows abnormalities how can it possibly be anything other than mental illness?
When you get to the point that you no longer tell people you are ill, it's worrying! Why do I feel the need to hide my illness. Maybe it's shame or maybe just the fact that with telling people comes the inevitable questions from people who only understand what the papers tell them of it. 'Oh, so you are just tired all the time?' and 'Thats's that thing where you get tired doing things you don't want to do isn't it?'

Yes...when I spend a day taking photographs of the dogs at the rspca and walking, cleaning the kennels, something which I love, I come home and collapse. Yet I couldn't think of anything I would rather do than this. I still suffer for it, the headaches start before I even get home, the pain shoots through my spine, tremors attack my legs and I couldn't be happier that I have spent my day doing something I love.

Oh but if only some people have that choice! People have died from M.E! People don't just die from feeling a little tired after doing the washing up. People die from the ignorance of the medical profession, people die because it is too much to suffer the constant pain, fatigue, sensitivities every single day in a darkened room, praying that the next day brings just a slightly less painful day.

'M.E. is comparable to AIDS and cancer and all the other vicious and uncompromising diseases that savage the body and, in some extreme cases, kill it completely'. And yet there will never be a time where everyone will accept it! It's hard enough being permanently in pain without being reproached for being so. 

Every night I go to bed and even though I'm not religious, I pray to whoever the hell is listening that I will be able to get out of bed in the morning. That I'll have the strength to get through another painful day and that the pain won't drive me to my knees! 

M.E is a neurological illness that affects every system in the body, it affects different people in different ways and it ruins lives. The symptoms are so diverse that it is incredibly difficult to make sure all are mentioned but here are just a few to give you an idea of what sufferers content with every day...

Fatigue: Utter exhaustion, often to the point of collapse.

Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. Skin sensations such as skin crawling and pins and needles may be felt.

Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.

Other symptoms: Body temperature disturbance, dizziness, vertigo, postural hypotension, sensitivity to light and noise. Possibility of sleep disturbance, nausea, loss of appetite, gastrointestinal disturbance, mood swings, panic and anxiety, acquired sensitivity to food, medication, alcohol and chemicals.

The best way I can describe what it is like to live with M.E is it's like living in a perpetual winter where everything is grey with flecks of colour that quickly turn to black once you admire or enjoy them.

It's very easy to focus on all the damage that a long term illness so early on in life can cause...losing friends, dropping out of education, missing out on the life you would have had if your body didn't fail you at every turn...but when I really think about it, yes I would change the fact that it still hasn't buggered off but I wouldn't change the lessons it has taught me. In the beginning I was so focussed on being alone with no friends to rely on but it made me realise that I needed to rely only on myself, no friends could get me through the agonising nights of pain and exhaustion. Sheer will and determination would!

My ideas for my future are those distant fading dreams that you can almost remember but if you don't think about it, it disappears completely. I wanted to travel the world and volunteer in far off countries, study criminal psychology and forge a career. The degree went down the pan when I couldn't cope with the workload and just to think of travelling the world is exhausting. But sometimes you have to redirect your dreams to fit with your ability. So I may not be able travel the world in one go so I'll do it one little holiday at a time and mark off everywhere I go. I'm keeping my fingers crossed that one day I'll be well enough to volunteer abroad but in the meantime, I'm content to spend my time working with the fantastic people at the local rspca and making a difference close to home.

A degree may have been too much but I've managed to complete a photography course which I didn't think I'd have been able to manage and currently studying for a Criminal Psychology diploma from home.

Also my family are completely amazing!! I imagine it's not easy seeing your child go through this illness, being confined to a wheelchair and spending days laid on the sofa because to walk around is painful but no matter what, my parents have been there for everything I've needed...to wash my hair when I'm too exhausted to do it, push me in my wheelchair just so I can get out of the house for a while and so many more things, I couldn't possibly write it all down. Without them, I definitely would not have survived this.  

Mark, my partner has been there for the past 4 and a half years. Through all the pain and turmoil this illness causes, through all the shoulder soaked nights when I question if I can really get through this. It can't be easy to live with someone who comes home at the end of the day and sometimes doesn't even have the energy to give you a hug and instead just collapses on the sofa or sits there just wincing in pain yet knowing there is absolutely nothing he can do it ease it. He is definitely one of the reasons to fight the damned thing with everything I have.

And finally comes admiration. I have met so many sufferers of this dreadful illness and what always amazes me is that regardless of how ill they are, how long they spend in a darkened room, they are always determined to survive and forever hopeful that one day they'll be pain free or even just a little better so they can spend one day doing something they enjoy.

So if you have learned anything by reading this, I hope it is that there is often more to an illness than the Daily Mail tells you. I hope that when someone, be that a friend, a family member or a new member of staff, tells you they suffer from M.E, you don't tell them 'Oh that's that tired thing' rather you ask them how they are or how it affects them. But don't treat us like lepers! We are just normal people trying to live a normal life, dealing with a little more than most.

Quote of the Day:  ''Strength does not come from physical capacity. It comes from an indomitable will -Mahatma Gandhi'

Monday, 7 March 2011

All you need is to whitewash these old walls...

...and paint something new. It's an idealistic concept that you could just throw white paint at your entire life and rewrite everything.

I know, I know! I've been gone ages yet again. I'm just genuinely useless at remembering this thing exists. A few things have changed since my last post so here's a quick update...I'm no longer running to raise money for ayme as they blew that with supporting some stupid new research so I'm now running for ME Research UK and you can sponsor me here, www.justgiving.com/Lozzzy-and-Mark . Please, Thankyou =]

Another thing, I failed at the Project 365. Or rather I just couldn't be bothered with it and frankly my life is too dull to keep even myself entertained with pictures from it so there we have it, FAIL!

And one other thing...Mark has a job!!! I'm really relieved but Mark, ever the optimist, isn't happy until he has signed the contract and started the job in May.

Now, back to the whitewashed walls. Life is full of colour, full of memories and people that make us what we are but the colours are not always bright. Sometimes they are just different shades of grey. The memories are there but when the people are missing, it's like being stuck in a perpetual winter with no sign of spring with all the vibrancy of life.

I was made blatantly aware of such a perpetual winter when I had a view of the rainbow that is normal life. It was Mark's birthday and we went out for a meal and drinks with a couple of his friends. It was a really good evening and it was so good to have normality. Friendship made all the difference to making that a good night. When I got home a day later and was on my own, I felt the shades of grey seeping back in. I became painfully aware of how much I had blocked out the lack of friends in my life. It was never something that bothered me because I had got so used to being on my own after I got ill and not having friends to confide in but after that evening, it hit me and I realised how much I miss having friends around and just the normality of it all.

I'd been watching the birds flying around without me for so long that I'd forgotten what it is like to fly with them in the coloured skies instead of watching from the forest locking in that perpetual winter. It's probably an odd description of birds and colour but it explains things perfectly.

It would be nice to be able to throw white paint at those aspects of my life that are shaded grey and paint it every colour of the rainbow. Or have a few flowers grow in that forest of winter darkness.

Ramble, Ramble, Ramble!

(Pictures from WeHeartIt)

Quote of the Day: Sometimes you need to catch a glimpse of the rainbow to realise all you need is a dash of colour to banish the grey.

Tuesday, 4 January 2011

Hello New Year

And then came January.

It's always easy to let the new year go by without so much as a hello and the last few years I have done just that because I've not really had much drive to achieve anything other than to get well but since that's out of my control anyway, it doesn't count!

This year however, is very different. My immediate goal is to start getting to the gym once a week in order to run 5km to raise money for AYME in May with Mark. www.ayme.org.uk if you want to check out what the charity does and if you want to sponsor me and Mark, this is the place to do it ----> www.justgiving.com/Laura-and-Mark . So far we have £16 but we would love to make it to at least £100 by May.

My other main goal is to buy a house with Mark in March, or at least by next Christmas. It's something we've wanted to do for a while as you know if you follow me and read my wonderfully boring posts. Until recently it hasn't been possible but as the year came to an end, it does seem financially viable if we compromise on a couple of things.
This christmas was the first proper christmas with Mark at my parents house but we are keeping our fingers crossed to have our next christmas in our own home =]

And one last plug...I've started a Project 365 blog to document my year and to see how long it takes me to forget to take a photo every day ----> www.lozzzyproject.blogspot.com Follow me if you like =]

Quote of the day: Nobody can go back and start a new beginning, but anyone can start today and make a new ending ~ Maria Robinson

Friday, 31 December 2010

Goodbye 2010...Wish I could say it had been nice knowing you

The year is at an end and thank goodness for that!

My nerves are shot to hell thanks to the stress of this year. Although there have been lots of highlights, it has been one big rollercoaster of emotions that were completely beyond my control. I know nothing completely devastating has happened but all those little things that build up have just made me relieveing to see the back of this year.

- Completed race for life
- Finished my first year of study with the Open Uni
- Celebrated mine and Mark's two year anniversary with a trip to Portugal
- Met some lovely AYMErs
- Visited an ayme friend in Gloustershire
- Passed my driving test

- Yet another relapse
- Six year anniversary of being ill
- Minor breakdowns all over the place, no idea what has been up with my emotions during the latter part of this year.
- Mark just got sacked...their timing definitely stinks!

There are probably lots of things I've forgotten but at least if I can't remember it, it won't cause me stress =]

Goodbye 2010. I wish I could say it's been nice knowing you but I can't so goodbye will have to do.
So here's to the New Year! May it be a good one!

Quote of the Day: An optimist stays up until midnight to see the new year in. A pessimist stays up to make sure the old year leaves ~ Bill Vaughn

Wednesday, 1 December 2010

It was enchanting to meet you

I intended to post this last month but as usual I'm a useless blogger! So anyway on with the story at hand. the 30th November marked the two year anniversary of mine and Mark's relationship and we celebrated by going to Bibi's, a restaurant in Leeds. It was just typical that the ground was covered in ice an inch thick so I had to wrap up warm and wear my wellies. So there we were in a fancy restaurant ordering venison and swordfish whilst wearing horrible wellies and my dress covered by a thick jumper. Despite the bad fashion statement, we had a lovely evening and Mark bought me tickets to see The Script at the O2 arena in March as a gift =D We are going to make a long weekend of it and have a day out in London too.
I doesn't seem five minutes since we first met. We are more in love than ever and I honestly can't wait until March when fingers crossed we are going to start looking for a house to buy.
Then fingers crossed Mark will ask me a certain question...here's hoping anyway =P
Now, moving on to the festive season. For once I'm actually looking forward to it. Usually I'm Bah Humbug! and I have been ever since becoming ill because I always had it in my head that it was just going to be another day of feeling rubbish. Of course the day always came and went without too much ill hassle but I still never really got excited about it. Maybe that's just an adult thing, I'm not sure. Anyway, this year I had all my christmas shopping done early, lots of wishes from friends and this will be my first proper christmas with Mark. We decorated the tree together and had a party for a few lovely AYMEr's. It was brilliant to see everyone.

(excuse the blurriness, my camera was drunk!)
It does look like it will be a beautiful day after all and hopefully my health behaves for the weekend.

I hope you all have a magical Christmas with your loved ones around you and for those who are ill, I wish you good health for the new year and lets hope Santa has put us in for a cure.

Quote of the Day: You scumbag, You maggot, You cheap lousy faggot, Happy Christmas you arse, I pray God it's our last. ~ The Pogues; Fairytale of New York...Quite frankly the best Christmas song there is!

Thursday, 4 November 2010

Time to dance in the rain again

'It was time to start again. Learn to live and love again, dance in the rain instead of trying to hide my tears in it. The light was finally shining through the fog that had surrounded for so long. Smiling to herself, she started to dance'

'And sometimes it just hits you and you realise that at that very moment, you have everything you have ever dreamed of'

'Sometimes you have to lose everything just so just you can see the true beauty of your dreams'