A Terrible Case Of The ‘Shoulds’ #HAWMC

So….here we are and it is day 8 of the wego health writers challenge. Obviously it is plain to see that I have not done the last couple of days and I am not doing today’s either! I feel incredibly guilty about this, I am afflicted with a terrible case of the ‘shoulds’. I should do it, I should finish the challenge….blah blah. Well for once in my life I am going to shake of the pesky should gremlins and do what I feel like!

I thoroughly enjoyed this challenge last year but this time I am finding it a terrible chore, a huge burden and because of this I haven’t really been doing it or myself justice. I am only starting to get back on my feet after one of the worst runs of bad health I have had in a long time, even making a cuppa is a Mount Everest sized challenge for me right now so trying to write a blog every day for a month is….well….just too big!! It sounds pathetic really but I know that those who suffer with similar illnesses to me will completely get this. Its not laziness or lack of motivation, its just too hard….I can’t really explain it any better than that 😦

I’m not saying I won’t pop on and do one of the prompts here and there. I’m not saying I will either! What I am doing is looking after me, a lesson that is taking a long time for me to learn but I am getting there!

x

Day 5 – Aspiration #HAWMC

“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue.

Okay so the sky’s the limit, what would I do?! 

Firstly and most importantly, I would hire the best team of medical researchers in the world and give them unlimited financial resources to find out exactly where the hell this ridiculous m.e comes from, what it wants and how to nuke it back to the murky depths where it belongs! When the cure is found and perfected I would jet set around the globe sprinkling it over everyone who needed it… yes the cure would be in the form of glittery fairy dust…what of it?! I would do this until not one single sufferer was left and m.e was declared extinct! Whilst globe trotting I would make sure to drop by and visit all of my lovely twitter buddies wherever they are in the world and regardless of their illnesses (times not an issue right?!) because these people have helped me so much and I’ve got the time, money and opportunity to give them a real big hug!

Secondly, I would pay extortionate amounts to have the current government removed from power (and preferably the planet). I would have more human being types put in place who actually give two hoots about the people of this country, not just the ones with silver spoons sticking out of their…….mouths…!

The final thing I would do would be to dance, run, ride a bike and other energetic fun things simply because I could, because it wouldn’t hurt to do so and I would do those things a lot!

 

Day 4 – Sharing Resources #HAWMC

Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one.

This is one of those prompts that makes me go ‘ohhh….mmmmmmmmmmmm……oh eck…..eeeeee….hmmm’ and other ‘I haven’t got a clue’ noises closely followed by long bouts of staring helplessly at the computer screen!

The thing is, I advocate as best as I can about my condition but I don’t do it in huge amounts. I tend to share articles that other people flag up on facebook, twitter about my conditions with my lovely twitter buddies and write few and far between blog posts. I don’t really have many resources as such, I mostly flail around and fall upon useful pieces here and there! Not exactly helpful here am I?! 

One thing I would highly recommend would be to type #me/cfs and #neuroME into the twitter search feature. Doing this will bring up conversations centred around those topics where a community of like minded people can then be found. It is a good idea to do this for any other conditions too so that you can broaden the community that you interact with and find out any information that is relevant and helpful. These communities inevitably lead onto articles, blogs and web pages being shared. Twitter has been a huge lifeline for me since I got sick. Pure gold dust.

Other Resources:

https://www.facebook.com/wegohealth

http://www.actionforme.org.uk/

https://www.facebook.com/ChronicallyAwesomeFoundation?viewer_id=644371629

https://www.facebook.com/groups/116996221671476/

…………………………….and im ummmmming again!!…………

………...mmmmmm……..nope, that’s it! I think this is all my foggy brain will allow me to do today which is far from fab but better than a blank piece of ‘paper’ I guess 😉

 

 

Day 3 – Wordless Wednesday #HAWMC

Post a picture that symbolizes your condition and your experiences.

 

I have pain and illnesses that always try to drag me down but I can always see the hope, floating just above me with a promise of lifting me up, even if it’s just a little way.

 

Day 2 – Introductions #HAWMC

Introduce your condition to other Health Activists. What are 5 things you want them to know about your condition? Share links to some of your old posts that you think will help the newly diagnosed.

 
Myalgic Encephalyomyelitis (M.E)

1. M.E is a neurological condition that comes with a huge, ugly entourage of symptoms. Severe pain in the joints & muscles, nerve pains that cause ‘electric shocks’ through the skin, poor temperature control, insomnia, cognitive dysfunction, sensory overload, nausea, dizziness, loss of balance & mobility, mood swings, disastrous immune system………the list goes on and on.
   
2. Despite wide spread disbelief in the existence of this disease, M.E has been accepted and registered by the WHO (World Health Organisation) since 1969 as a neurological condition under the code G.93.3
3. This condition has changed my life completely. I can no longer work, socialise or live in any way that resembles the person I was before I got ill. It has not, however, made me unable to live a life, I have just had to adjust to the limitations that have been forced upon me by M.E. This process has been a million miles from easy and I wouldn’t even say that I am completely there yet. However, I have come to realise that life is to short to waste it wishing for what once was. I may as well go with what is and make the most of it!
4. M.E impairs my cognitive abilities immensely. I have been sitting trying to write this small piece for over an hour, it is such a struggle to do such simple tasks when your brain has been turned into sludge!
5. Having an ‘invisible’ illness soon brings to light those who are the real and genuine people in your life. They care about how you are, they sympathise with your condition and understand when that means your time and relationship with them has to change, they are interested in your progress, in the progress of research and how things are panning out. Most importantly they believe you and that is the most precious thing someone with an illness such as mine can receive from others. Belief.

 

Links to previous posts that may be of interest to the newly diagnosed:

https://dizzylolly.wordpress.com/2012/05/08/be-aware-x/

https://dizzylolly.wordpress.com/2012/05/10/the-m-e-is-not-cfs-minefield/

Day 1 – Getting Started! #HAWMC

Why you write – tell us a little bit about why you write about your health online and what got you started. Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

I write about my health because it is a big part of me, of who I am. It doesn’t define me, I don’t let it rule over my personality, but I can’t ignore the fact that the illnesses I have are here to stay and therefore, however much Id love to deny it, makes up a part of my self.

Myalgic Encephalomyelitis (M.E) and Fibromyalgia are two illnesses that are heard about a lot these days. There are huge online communities teeming with people who suffer from them, talk about them, blog about them and yet there is still so little understanding out there.  If they are mentioned in the press it is very often in a negative light that causes the general public to believe that those of us with these illnesses are lazy, malingerers & no hopers. I write about it and share research articles about it to try and raise awareness, to try and help people see that these illnesses are real, life changing and in desperate need of true recognition and research. I don’t expect to make huge changes, I am just one small voice but if every small voice puts the facts out there it culminates in a big voice that is shouting for help, for understanding. I want to be a part of that, I want to make my small voice count. I won’t be writing in a clever manner, I will be writing as me, from my heart about something that effects me and my life.

“Never give up and most importantly be true to yourself. Write from your heart, in your own voice and about what you believe in” Louise Brown.

I have chosen to write as a part of HAWMC because I thoroughly enjoyed doing so last year, its an almost therapeutic exercise. I found that using the provided prompts gave me focus which is something I struggle to gain a lot of the time due to the dreaded brain fog. It gives me a platform to put forward the important issues surrounding my illnesses and their effects on my life. I also like the fact that there are many others out there joining in the same challenge. That there are going to be so many individual approaches to the prompts and so many different illnesses out there being put forward into the spotlight.

Its my second year and I’m ready & raring to go!

x

Oh, look at this plate I found!! x

I cannot believe it is January already! Not only that but it is three months since I wrote anything here, three months!! I know I said I was going to start dropping some plates but I think I must have taken this particular plate and stored it as far to the back of the highest cupboard I could find!! Anyway, I have got it out now, I am dusting it off and doing something with it 😉

It hasn’t been the best few months to try and wind my life down really. My Grandpa passed away, I got more chest infections, I got diagnosed with bad Asthma, I have a painful knot at the base of my spine that is being investigated, I had to go through the ATOS benefit process again and, of course, we had the wonderful but shattering Christmas so there has been quite a lot going on. Saying that, I have still managed to wrap my head firmly around the idea of prioritising. I have stopped trying to do everything at once (most of the time) and I find that I can rest much easier in the fact that doing a bit here and there is still an achievement for me.

I find my brain still buzzes at a million miles an hour thinking about writing, crafting, photography,coursework, catching up with people, the house, finances etc and I guess that is something that I will likely be stuck with, I can physically stop myself doing too many things but I have yet to find a way to dial my crazy brain down!

I am pretty much a ‘wet dishcloth’ at the moment, totally wiped out and exhausted but I am attempting to pick myself up and work towards some of my goals, slowly but surely. I am quite sure this particular blog entry is a load of old nonsense, I am writing it with a rather foggy brain, but I just wanted to put pen to paper (fingers to keys) and start writing again.

I am hoping that this year will be a better one, that things will get a little easier health wise, but if not I still have a lot to be happy about, to gain strength from and I think that makes me one of the lucky ones 🙂

 

Grandpa: Derek Savage 1931 – 2012

Spinning Plates. Dropping Plates.

I am slowly but surely coming to realise that, although being ill doesn’t have to rule my life, it does change it. I can’t keep on spinning a dozen plates at one time without dropping some. I need to start making some choices about what I do with my time and when I do it.

Lately I have taken a step back and taken a hard look at my life, my health and how I am really truly dealing with it. The honest truth…well I’m not! I am trying to fill up my time doing lots of ‘constructive’ things, proving my worth to myself and others and running myself head first into the ground in the process! 

I had to stop work because of my illness, I just wasn’t capable any longer and believe me when I say I fought a long fight before I stopped! So what makes me think that I can cope with lots of activity at home instead? I guess it is because I am a positive thinker, I always have been but there is a fine line between positive thinking and stubborn denial. I need to look at the cold hard facts sometimes, see myself in the place that I really truly am and act accordingly. My energy levels are sitting right there next to zero, my brain power is hovering near the off switch and my physical capabilities are just about large enough to fill half a matchbox! I cannot fill my time up with constant, constructive activity and I need to stop trying to do so. I also need to stop looking at myself as a failure and stop worrying about what other people think about my illness and my lifestyle. 

Right now my symptoms are getting worse. My mobility is getting less, my immune system is getting weaker and my pain levels are climbing up and up. I know the general perception when it comes to chronic illnesses and pain is that ‘if you don’t use it you lose it’ but what they and I need to take on board is that with M.E sometimes ‘using it’ is the worst thing to do!

So…I love to write, I love my photography, I love my crafting and I am half way through an open learn diploma but I quite simply cannot do it all. Not all at once. I am going to pick and choose what to do and when to do it, constantly gauging how I am feeling and how I am coping. There are going to be times when I do none of it and that is just fine to. My main priority is to have as healthy a life as possible and if that means cutting down then so be it.

I don’t like it but I am going to do it. From this moment on I will be spinning just one plate at a time and sometimes I may even drop that one. It doesn’t mean I am a failure it just means I am sick and that is just what happens sometimes.

Picture of Happiness! :-)

I just wanted to share here that two on line art galleries have accepted some of my photography work!!

It’s very exciting and something of a positive note to write about for a change 🙂

x

The Medication Roulette!

I think it is probably fair to say that over the last couple of months I have had a hell of a time! Chest infections, pleurisy, trapped nerves, muscle malfunctions, burnt stomach and convulsions due to a medication error and that is naming but a few. I have felt thoroughly miserable, a regular Victor Meldrew! After a good look at my recent medical history with Ambulance crew, Emergency Doctors and my regular GP it seemed to come to light that things went on a huge downward spiral after the commencement of a particular medication. The irony of this was that it didn’t actually help me with the issues for which it was first prescribed so in a nutshell I took a tablet that made me worse…great!

Since stopping said tablets I seem to be on the ‘up’, I’m up and about more, have seen more people in the last two weeks than I have managed in ages and feel generally a lot more smiley! It is amazing how an adjustment of one tablet can make such a difference and I would highly recommend that everybody takes a good look at what they are medicated with and if it is really doing them any good. Are the benefits of that tablet outweighing the side effects? Digging back through the foggy memories can you remember if you felt better or worse before you started it? I know that some medication is necessary, I am still on plenty of it myself but there could be that odd one that is making things worse rather than better, it’s surely worth an assessment right?!

After this whole horrid experience I decided to keep track of my pain levels,  patterns, symptoms, environment etc using an app on my mobile phone. It is actually really handy and I am completely in control of the recording of my illnesses. Using this will enable me to have a good idea of  when medication is helping or worsening symptoms and then hopefully I won’t fall foul of the medication nightmare again!

As an aside it has amazed me how much pain I seem to put up with these days on a daily basis! My records are full of ‘this pain, that pain’ every day and yet I still feel better than I have in ages, it is incredible what we learn to cope with really!

x