An Inspiration?

Over the past month, two different people, in different situations, completely unconnected, and from different and separate conversations have said that I’m “inspirational”, and that I should write and blog more about my issues and how I try to overcome them.

I found this bizarre, insane, potty, and frankly wrong.

But then I thought about it a bit more. Just because I don’t find myself inspirational in any way, shape or form doesn’t mean that others don’t.

I find the fact that I’ve had to find ways to make sure I eat before I take my morning medications annoying, but maybe others find that I’ve found a solution to the problem inspirational and helpful.

I hate that I have to plan things by the hour sometimes, and that I have to write everything in multiple calendars not just so I remember them, but so that they actually get done. Others may find the combined use of the calendar on my phone and a blackboard wall calendar extremely useful, and not something they’d thought of before.

There are loads of things like this, from pockets to pillows, medications to massages, the list grows constantly.

While I look at the seemingly unending list of things I use as tools to help me manage my various conditions as second nature now, or common sense, or even just tricks and tweaks I’ve picked up after suffering for so many years, that list might look like the holy grail of things to help them, whether they’re just starting their chronic illness journey, or like me, have been battling for many years and still struggle with some basics – or just spot something they’ve never tried before!

I’m in the process of writing what looks to be a long and informative article, originally designed to be sent to The Mighty, but I feel that now might be a good time to resurrect my blog, and post this, the article , and other things on it.

As I’m in a reasonably good place at the moment, maybe it’s time I start airing my thoughts again.

I struggle every day. Sometimes it’s just fatigue, sometimes it’s pain, sometimes it’s my depression, sometimes it’s anxiety, sometimes it’s a fabulous combination or all of them. Different things need different coping techniques and things I need to do to battle through them, and manage it so I don’t end up a mess who can’t function.

Today I’m tired, so today I let myself nap. It’s not something I do often, most of the time I can hold on, whether it by just resting, or taking things slowly and easy so as not to drain what little energy I have too quickly. I can shower, dress, apply some make up and blow dry my hair in an hour fairly easily, and that’s without rushing. On days where I’m tired but have to go out, I have to block out an hour and a half to two hours just to do all that, because I know that if I rush myself or do it at my usual speed, I’ll end up in a state and probably be unable to do what I need to.

I’m going to try and write a post weekly. I’m going to put it on my calendars to make sure I do it. I can’t speak to the content yet, maybe summarising how I coped with any of the weeks struggles, maybe just bits on what I suffer from, I guess we’ll see how the week goes and how the muse strikes. I will admit that writing this, and writing the bigger article, has ignited something in me again. It’s reminded me how much I love writing, and how well I can get my point across so much better when I put pen to paper (or fingers to keyboard as it stands) as opposed to just speaking. I have time to think about what I want to say, how I want to say it. I value that time. Time to think. It’s time that I use to sort through the riot in my head and get things straight.

I know that there’s not many people that read this blog, it doesn’t get many views, but if you are reading this, and there’s something that you’d like to read about from me and my points of view, then just ask.

This Girl Can

It’s been a while.

In the months since my last post, a lot has happened.

I started playing rugby again for one. The rugby club set up a ladies team, so I joined up. It’d been 14 years since my last game of rugby due to my knee injury, so I was unsure whether it would be a good idea or not. I got cleared by the phsyio, so I went to training. And my God, it was amazing. I would be utterly dead for a few days after a training session, but I was getting out of the house, I was exercising, I made some new friends.

11 weeks after we created our team, we played our first game. It was a pre-season training game, and it was long and hard, and we didn’t have a chance to win it, but there’s no better way to learn than to play. I did well. My fitness wasn’t, and isn’t, up to scratch, but I ran, I passed, I scrummaged, I tackled and got tackled – and that’s where it went wrong.

In the final two minutes of the game, we made a play, where I (as a prop) would charge forward as far as I could, and go to ground – or offload if I needed to. I got the ball, I ran forward, I made it about 5 paces and I got tackled, hard. I managed to offload the ball as I went down, as I was twisted and landed awkwardly on the floor. The next thing I know, I’m lying on the ground, unable to move my left leg, and in absolute agony. I was literally picked up and carried off the pitch. There were swear words and tears of pain and anger. I knew I was done for the second I hit the ground.

Skip forward a few weeks and hospital visits, crutches, a brace and a plethora of painkillers, and I’m told that I have snapped my ACL (Anterior Cruciate Ligament) and have torn my meniscus (the cartlidge). Wonderful. Surgery. Yay. I will not be playing again this season. Double yay.

Skip forward again to today. I had the surgery 4 months ago. I’m healing really well, it’s strong and it’s working. My surgeon is astounded and proud. My physio is amazed. I’ve gone back to rugby training – although I’ve got to do it slowly and I’m not allowed to take any contact.

Today, in our 8^th game of the season, I donned my boots, and I ran on with a water bottle and the kicking tee. It felt wonderful. I’m riding a little bit of a high from it as I sit here and type, as well as being in a great deal of pain. I proved I could jog, I proved that I am on a comeback, but that doesn’t mean that I’m not still stiff and crampy from all the activity. My calf muscle is one big painful knot, but it is all worth it. Today I got to be back on a rugby pitch, as an official member of the team in boots and with a purpose. 

It's No Picnic

"It must be so easy being you."
"It must be lush getting to spend so much time in bed."
"You're so lucky that you don't have to go to work!"
"You're just lazy."
"You do [blah] every week, you can't be that bad!"
"You listen to too many doctors, there can't be all that wrong with you."
"Stop complaining, everyone aches occasionally."

To the people who constantly say these and other similar things to me, I say fuck off. It's not easy, it's not lush, it's not lucky. I'm not lazy, I am that bad, I do have all that wrong with me, and if you felt all the pain I feel every second of every day, you'd complain sometimes too.

I'll show you.

This is my minimum daily medication intake. I can, and often do, take other painkillers during the day upping the numbers. 

This is my AM medication. It's mostly vitamins to try and keep my immune system going, and my energy levels up, with a few painkillers thrown in to eradicate the pain build up from during the night.

This is my PM medication. It's a combination of painkillers so I can sleep and antidepressants to keep me sane.

This is my minimum weekday total of medication. 

Lots of colours, lots of painkillers, lots of empty sheets and boxes when I fill up my tablet dispenser every week.

These rolls of tape are used at least twice a week - as the tape lasts and stays on for a few days. 

The thick blue tape is used on my knee, and all three are used on my shoulder. I also often have to strap my ankles.

I do not take these tablets for fun. I do not take them for the sake of it. I do not take them just because. I do not tape up for attention. I do not tape up as a fashion statement. I do not tape up because it's fun. 

I take them to function. I take them to exist. I take them so I can actually do the little bits I actually do. I take them so I can survive. 
I tape up to keep my joints in the correct places. I tape up to support said joints. I tape up so they don't give way in agony after 10 minutes of activity. 


Next time you decide to take the piss, or comment on how jealous you are of my life - remember this post, and think about whether you'd want to sacrifice what you have to live my life, to take all those pills, and struggle with everything they're for, their side effects, and the need to take extra pills to counteract any damage they do.

Believe me, you'd be changing your tune really fast. 

Having a chronic illness is no picnic. 

Funding a Breakthrough

I have ME. It’s a huge part of who I am. I may not be my disease, but it certainly effects every second of my life.

It’s the part of me that’s unreliable. It’s the part of me that forces me to spend so much time lying down. It’s the part of me that I hate. It’s the part of me that makes everything more difficult. It’s the part of me that squashes the rest of me into a tiny box.

I am not my disease. I am my own person, I have my own story, my own personality, but keeping it afloat and not succumbing is a huge battle – a battle I don’t often have the time and strength to fight, especially considering I’m fighting my own body 24/7. I don’t know how to be the real me in my life anymore. I’m not sure who the real me is anymore. I’m lost in a sea of pain, fatigue, tiredness, a touch of self-pity, with an atmosphere of depression and anxiety surrounding it.

I want a cure. I need a cure. I won’t be seeing a cure in my lifetime. But, if I can raise money for the advancement of medical science, for awareness, for development and understanding, for a breakthrough, then maybe the next generation can be cured.

I may suffer every day for the rest of my life, but it won’t be for nothing if my fight and involvement can help the future.

Any money donated can help, please click the link below to help and show your support.

 Click here to donate

Realizations, Fights, and Apologies

Life can get messy when you live with chronic illness. Parts of your life get sacrificed when dealing with flare ups, with the fight against your body and mind, with new ailments appearing and old ones dragging you down. 

I've drifted from my friends recently. I've been exhausted, dealing with new pain, with a recurrence of anxiety to do with public appearances, and with a simple desire to hide myself away hermit style and disconnect from the world. I'm aware this isn't healthy, nor is it good for my social sanding or relationships with my friends, but there's not much that can be done about it apart from wait for it to pass. It always does, it may take some time, but it does always eventually go away.

I could force myself out, but I would only end up being miserable and regretting it, and I don't believe someone should be out if that's only going to be the case. Yes, I still do my rugby club duties on a Saturday, and quiz on a Sunday, but they're different that usual socializing. I'm working, it's family, it's comfortable, it's where I want to be. It is bumming me out though, I miss my friends. I miss the laughter, I miss the conversations about things I don't understand and amusing them by the fact it all goes right over my head. I miss not being judged.

I have a feeling that a lot of this anxiety has been upped by not wanting to bump into the guy mentioned in my previous post as I always avoid situations that make me uncomfortable; and because of an incident that happened a few weeks ago. It happened at the rugby club which has made me slightly anxious there when I know the individual involved in the incident could be around, but I know there are others there who like me, trust me, understand me and what I'm going through, and that helps. 

The aforementioned incident was ridiculous. I thought so then, I think so now, but that doesn't change the fact that it happened and that it's affected me. The culprit, who will remain unnamed, approached me and asked me what was wrong with me and why I don't work. I replied that I'm generally unwell, how working on a Saturday knocks me for six and that it takes me a few days to recover but that it was totally worth it. She then proceeded to rant at me about how I listen to doctors too much, and that I can't be as ill as I say or have all all the conditions and ailments that I do; that I should simply think positive thoughts and I'll get better, that taking long walks and hikes for charity will make me feel better that I need to stop believing that I'm sick and disabled and then I won't be. She was insulting, ignorant, arrogant and completely oblivious to the damage she was causing me. I was in tears in front of her, I shouted and was very visibly upset and distraught because of her comments and she stood there asking me why I was getting so upset, really not grasping the fact that it was her hurtful words that caused it. 

I'm sure there are other factors that I haven't yet considered that are contributing to my despondent state, but I'm certain that this hasn't helped. 


I'm getting there. I'm better than I was last week, and I hope things will improve more over the upcoming Christmas period, but it's going to take me time to get back to the point that I'm comfortable being out in public again with my friends. I've still got the shoes that I need to wear to do so, it's just they're giving me blisters, and I'm not ready to try and wear them again. 

I hope they understand. I hope they're reading this and nodding knowingly, and realise that I'm not avoiding them, I'm not fobbing them off, I'm just struggling to get by and exist at the moment, and I'm sorry that I'm not around - I really truly am. 

To sleep: perchance to dream; aye, there's the rub...

Insomnia is a bitch.
Painsomnia is even worse.

I have the misfortune of occasionally suffering from a combination of the two, something that is most definitely less than fun when you suffer from chronic fatigue to start with.

Last week - from Sunday afternoon til Saturday morning I had no more than about 12-15 hours sleep. My shoulder, back, knee and ankle put me into a whirlwind of pain, basically making my contract with the sleep fairy null and void. I'm falling apart, and the one thing that I could really do with to let my body try and fix itself is sleep, and it's the one thing that it wouldn't let me do.

I'll admit that I slept a bit more than I had any other night that week on Wednesday night, but as the insomnia carried on afterwards, I'm putting that down to the fact that I'd had my flu jab that afternoon and it knocked me for six. I slept Saturday night too, after a long day, and then a subsequent night out in Dorchester resulting in arriving at the spare room I was sleeping in at about 5:30am. I slept well on Sunday night too, being so exhausted from my weekend antics that I passed out from exhaustion rather than fell asleep. 

I was hoping that that would be the end of this bout, but here I am at half two Tuesday morning tearing my hair out at the fact that I'm not asleep - and can't seem to get there. No amount of reading, or puzzles to wear out my eyes and brain seem to be working. Nor does the sleep mist I have or eye masks and pure determination. 

I'm going to hope that this is a side effect from sleeping so much last night (I had a good 10 hours) and that I sleep well tomorrow. If not words will be had with my Doctor on Wednesday when I go in for steroid injections in my shoulder. That might do the trick, less pain equalling more sleep, but I might need an alternate solution. Not sure sleeping pills will be the right thing, but at least he might be able to suggest something else that will put sleep back on the menu for me! 

Zero to Hero

The last year has been a series of ups and downs, starting mostly with downs, and (so far) ending in mostly ups. 

Compared to where I was this time last year, deeply suicidal, depressed, anxiety riddled and in generally a miserable state of affairs, I'm now much happier, cheerful, still suffering but no where near to the same extent, and starting new chapters of my life - something I never thought would happen. 

For starters, I'm back working at the rugby club. After two years of being absent, I made it back and aside from the fact that there are a few new faces; it's like I never left. I'm back doing the bar work on a Saturday, appearing occasionally on a Thursday night, and really loving it. Everyone was very understanding about my sabbatical, there were little to no questions asked and I was welcomed back into the family with open arms. It's been 9 months or so since I went back, and I'm sat here gagging for the new season to properly begin so I can get back into it again! Never was a fan of the close season!



One of my favourite things that's happened to me this year is getting my reading bug back. As a child and teenager I spent the majority of my time with my nose buried in a book, and then lost my ability to concentrate enough to read (an unfortunate side effect of the ME), something that was both saddening and annoying to me. 

I started reading again this year, starting simply with the Nikki Heat books by Richard Castle (linked to the Castle tv show). They're easy to read, have good plots, and were perfect for the re-entry to the world of books. I then went on to Derrick Storm books and haven't looked back. I've read Michael Crichton's Jurassic Park, The Lost Symbol and Inferno by Dan Brown, reread Torey Hayden's novels, and haven begun the Tempe Brennan series by Kathy Reichs. I've lost count, but I think that makes just over 30 books. That's more than I've read in the past 8 years combined. And I freaking love it. 

In other news, I've finally decided that I'm in a place where I can start doing more with my life. Whilst I don't feel able, ready or capable to start a college course, or even something with The Open University, I decided it was time that I try for some more education.

Having flunked out of Sixth Form and my A Levels, and then again doing a Film Studies course at college the following year, I gave up on being able to gain any kind of further education. Aside from my complete lack of concentration span and the way that education works in later years of study, I lost confidence in myself, and struggled with my anxiety over the whole situation. That was until recently. 

As mentioned above, I have got back into reading again, and because of this I feel like I can use that new found ability to proper use. In the last month I have started two separate online courses, both of which will gain me proper and recognised qualifications, but have no deadlines. This means that I can complete them at my own speed, with no pressures on me other than the ones that I impose on myself. This is paramount to me being able to succeed (and even think about trying if I'm honest) as this is a really big jump forward for me in my progress to find and keep my shine and become the person that I want and deserve to be, but I still need to do it slowly and at a speed that's comfortable.

These two courses are very different from each other. The first is a Nail Technician course, to expand my ability in the nail art that I already do, and gain a qualification so that I can progress forward and perhaps start my own small business - something that the course also teaches you to do.

The second is a Criminal Psychologist course. I love crime, murder, forensics and such, and learning about the reasons behind crime and criminal's behaviour is something that both intrigues and excites me. This is a larger course, with more work and reading to do, but again has no time limit, so whether it takes me a year or three to complete, then so be it. 



I have come on leaps and bounds in recent weeks. On Thursday this week for example, I was required to attend a speed awareness course due to getting caught speeding a few weeks ago. I was to attend for four hours at a local hotel, on my own. I knew no one there, barely knew the place I was going, but I did it. I went, I stayed, and I suffered no problems whatsoever. 



I am so very proud, pleased and amazed at myself. I've still got a long way to go, but I'm further than I ever thought I could be. Like it says in Katy Perry's Roar "I went from zero, to my own hero." it's a highly appropriate quote for me right now, and I've never been more proud.