Speechless (almost)

This morning I got a phonecall, I phonecall that reduced me to tears….but in a nice way.

My best friend from school, Kim, who I haven’t seen for years (literally), phoned to tell me she had just finished the London 10k. She was standing outside Buckingham Palace in the 30 degree heat having just run 10k in less than an hour – absolutely amazing!

That fact alone brought tears to my eyes but what really made those tears roll was the fact that Kim ran the 10k today to raise money for the ME Association.

It’s quite hard to explain how much that means to me. Our friend Fraser ran in Washington DC last year to raise money for the same charity and the fact that these two lovely people have put themselves through so much to support not only me but everyone with M.E. leaves me speechless.

I quite simply can’t imagine running 10k….I can’t imagine running 10m. In fact I sit and watch sport on the tv and just watching it exhausts me, but when I think about people actually running about for 90 minutes on a football pitch it blows my mind. I’m not sure if that’s a feeling that “normal” people get too, is it?

I have huge admiration for anyone who can run 10k, particularly in the 30 deg heat, and in such a great time. The fact that Kim chose me and M.E. as her inspiration is just quite incredible.

M.E. can be a very lonely illness and as you are lying in bed you often feel like everyone else is carrying on without you. For someone to ask if they can run a race for you it reminds you that you still have friends, you still have people that care about you, you still have people who support you and want you to recover, you still have people that love you.

Thank you Kim for taking the time, effort and energy to support me and remind me that people really do care. I’m so grateful, so blown away, almost speechless. Thank you.

If you would like to sponsor Kim and make a donation to the ME Association please visit Kim’s Just Giving Page.

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Life’s Victories

My life is all about small victories…. the victory of getting up in the morning, of having a conversation, of writing a blog post. It’s these small victories that keep me going day after day, well that and my husband.

Life can feel like a total battle sometimes, whether I’m battling my body, my mind or the health service, it feels relentless at times. However I have some victories to report to you today, victories which have made me realise that there ARE people out there who care and want to help.

First of all, a few months ago I got my wheelchair. It’s the most basic, plain wheelchair but I love it! It means I can get out of the house! Obviously not on my own, but it has given me some hint of freedom on my better days.

Then on Saturday a little piece of laminated card popped through the letterbox. This little piece of card is as though someone is saying “yeup, you need this, I agree you’re ill”, it’s like a key to a new world, the world of oudoors! That little bit of card is a Blue Badge.

It’s hard to put into words how much this piece of card means to us. It will make a massive difference when going to hospital appointments not least because J wont have to push me for miles or struggle to get me from the car to the wheelchair because there’s no space between cars.

RANT ALERT!

I have to tell you about our ridiculous trip to the hospital the other day….before the blue badge. J parked up the car a considerable distance from the entrance we required, that was to be expected and we figured it wouldn’t be too much of an issue as J could just push me in the wheelchair on this occasion. Wow did we underestimate that short journey! All was going well until we came to the first of many roads we had to cross. I think you can guess where I am going here…the kerb was HUGE! In fact there were no lowered kerbs anywhere to be seen! J had to struggle with the wheelchair to get me from pavement to pavement and eventually we just walked along the road!!

Now surely outside a hospital of all places there should be a decent level of accessibility? J is 27, he’s fit and well, but tackling these kerbs proved very difficult. Imagine an elderly couple trying to get to an appointment or even my own parents, I know they’d struggle (note parents I’m not calling you elderly!).

Completely disgusted by this I have resolved to take it up with the council, when my brain will cooperate long enough for me to write some kind of coherent letter!

RANT OVER!

Apologies for that wee tangent!

So, back to my victories! Well I arrived at the hospital the other day to see my clinical psychologist. She took one look at my wheelchair and burst out laughing. At first I was kind of taken aback… why is she laughing? This is brilliant! This is my relative freedom we are talking about here. Anyway it turns out she thought it was the most “unfit for purpose” wheelchair she had ever seen! Why? Well I need someone to push it at all times, I can’t even move myself a few inches without help.

I’ve mentioned before how much I hate asking for help, and well the psychologist quite rightly pointed out that this was the worst possible solution for me from a psychological stand point. The great news is that she did something about it and I’ve now to get a wheelchair upgrade!

What’s my point? Well my point it this. I was so amazed by the victory of actually getting a wheelchair that I would have taken it no matter what it was like. For us, it was a life changing event and we were just so pleased to be given this help! However, for someone else looking in they couldn’t believe that we classified this as a victory. In fact she was so appalled by it she asked my permission to contact the relevant authorities to sort it out.

Then another amazing thing happened…….. she wanted to help us MORE! She has put the wheels in motion (sorry) to get an Occupational Therapist (OT) out to our house to see what kind of help we can get at home. I thought I was going to cry…. someone was helping us, someone cared. Someone was taking the time out of their day to make phone calls and fight our battles for us. Someone was leading us to victory!

I can’t quite describe how amazing that feels. For 3 years J and I have struggled on by ourselves and to be perfectly honest until now no-one has shown an ounce of concern about how we get on at home or how J copes! At my assessment for my blue badge I was with TWO OTs, I told them that J has to carry me around the house and their only reaction was “ooh he must be strong”. That was it!

Yet here we are now with the support of a wonderful lady who cares. She doesn’t just care about me, she cares about J too, a man she has never met! Do you know what even if nothing comes from her phone calls and the OT visit I will still be immensely grateful for the kindness and help she has shown us. She was shocked that no-one had tried to help us with this before and in a way that kind of just sums up our whole experience with the health profession since I got ill…they’ve done the bare minimum to help up til now.

I feel like for once people are starting to realise that it’s not just me, but J that needs help too. I feel like we have won a huge battle without even really realising we were fighting it. I feel like this could be the beginning of some help, but importantly to me it’s help I didn’t HAVE to ask for.

Victories can be hard to come by in this world, but every time I sit my bum in my wheelchair or pop my badge in my handbag it’s a reminder that there are people there who care, who want to help and who, finally, have some understanding of M.E.

Me vs My Mind

I was rather quiet for most of April, I hadn’t planned to be, but you soon learn when you live with M.E. that planning is a bad idea. What do I mean? Well planning to have a friend round for a coffee next Friday morning…it never works. Invariably I have to text the night before or in the morning and say “i’m really sorry I’m just not up to it today”. In fact I should probably make that a template text on my phone! I’ve always liked having plans in life…maybe that’s one of the reasons why M.E. can really bring me down?

I’ve never really spoken out about my depression before…and in actual fact 10 minutes ago when I started this post I had absolutely no intention to…yet here I am. I was talking to a friend on twitter today who has a chronic illness, like me when she first went to the doctor she was told it was depression. Like me, she didn’t actually have depression at the time, but like me she does now as a result of her condition and everything she had been through.

I have been on antidepressants for six years now – wow, that has actually really shocked me, I’ve never added it up before. When I was first sent to the clinical psychologist because my illness was “all in my head” I was prescribed with them, and I took them hoping against hope that they might actually have some kind of effect. In fact they made me even more of a zombie than I already was, but over time my body got used to them. Did they make a difference? Well they had absolutely no effect on my M.E. that’s for sure!

Six years later and I now take three times that original dosage. This time though it’s because I really am depressed.

I’m pretty sure that if you asked most people I know they’d say that I’m not depressed. Why? Because whenever I see people I have this need to be the “cheery”, “positive”, “things aren’t really that bad” Rhoda. I try to hide how bad my M.E. is and I definitely try to disguise my mood. The truth is though that in my head I can be feeling like there is no point to my existence.

I don’t quite know how to explain this. I feel like I’m lying in bed or flopped on the sofa and the world is carrying on without me – kind of like when you were at school and you’d get out early to go for a doctor’s appointment and realise that in fact the whole world was still revolving outside those four walls – make any sense? Every year my birthday comes around (as they do) and I realise that’s another year of my life spent in the house, imprisoned by the M.E. jail.

I think about what I’ve actually achieved in these M.E. years, I think about what I had planned to achieve by the time I was 28. I try to get myself to the bathroom and realise that ten years ago I would feel the same level of exhaustion after helping my Dad at the croft all day. I feel useless.

There have been some truly really dark days and weeks which although I’d like to share, I can’t. Just the thought of people I know and love knowing how I’ve been feeling is enough to put me off.

I actually requested to go back to the clinical psychologist last year as I felt that my mood was getting too much for me to cope with, and I needed someone that I didn’t know to talk to. I think that has been the best move I’ve made in these M.E. years. To have someone there to talk to, someone that I don’t feel I have to protect, is invaluable to me.

Of course actually getting there and seeing the doc requires planning and she often gets the “I’m really sorry I can’t make it” line from me. She doesn’t care though, she just sends me out my next appointment and we see if I can make it.

The appointments in themselves absolutely flatten me, never mind getting there etc, and I know that for days afterwards I will have to try and recover. Even just talking exhausts me, but I know that I’m helping to remove the dark clouds that gather in my head and for me that’s worth all the pain, fatigue and stress of going.

Since I’ve been seeing the psychologist I have discovered that I have OCD. I can hear people groaning from here….she goes to see a psychologist and suddenly everything is wrong with her. I can assure you that’s not the case.

I’d been behaving very strangely for months (moreso than usual!) and this odd behaviour was not only extremely tiring but really depressing, I couldn’t control it! This is the first time that I’ve actually written it out, thereby make it real! It all started when I HAD to hold the fridge closed for 10 seconds, which soon became 5 x 10 seconds, which soon became holding the taps for 10 x 10 seconds, then even controlling the length of time I was on the toilet in terms of 10 seconds. That’s just a hint of it, there’s plenty more!

I actually thought I was going mad. I’d check the window was shut 10 times, I’d press my back button on my phone 10 times before I went to sleep, and I had absolutely no idea why I was doing it but there was no way in Hell that I could stop myself!

When I finally found the guts to talk about this I was told it was a “manifestation of worry”. It took me and my foggy brain a while to get my head around but then it all made sense. I spend all day alone while J is out at work, I’m too tired to talk on the phone and have no energy to do anything of substance. So I was channelling all my worry and stress into things that I could do …. hold the taps after washing my hands etc. Does that make sense? I’m not sure I’m explaining it very well.

All of this was adding to my stress, my low mood and ramping up my anxiety. Not to forget using up huge amounts of my energy!

It’s been a struggle but I am getting better. I know I worry far too much about things way beyond my control and I know that I still have a lot of my OCD traits but I am working on it. By working on it I feel like I’m actually achieving something and that feeling of mastery is helping my mood.

So you see although at the start when they thought it was all in my head it wasn’t, now I have a new thing to deal with….my mind.