I did it!

For over a year now I’ve known that this weekend would be a hectic one, one that could really test me. Why? Well it was our friends’ wedding! A wedding is one of these occasions that we all hope are a once in a lifetime event so there was no way I was going to miss out.

For the whole of last week I rested as much as possible. I had this goal that I wanted to achieve, I wanted to be at that wedding. So every time I found myself about to do something too tiring I immediately stopped myself and knew that it was for the best.

So Saturday came and I’m pleased to say I made it! In fact I lasted much much longer than I thought I would. It was such a great day and it was so nice to see everybody. I’ve said it before but M.E. is a very lonely condition, so although I found it so tiring talking to everyone I kept reminding myself that just for this one night I had the opportunity to talk to friends! 🙂

All in all I had a great time. I sat my bum in a chair and didn’t move, I just concentrated on talking and catching up with friends. I was, and still am, so proud of myself that I managed this. There were several times I was about to give in and go to bed but despite knowing how awful I would feel the next day I kept going.

Yesterday however was terrible. I slept the entire day, only getting up at 4.45pm to eat my lunch that I had been far too tired to attempt at 1pm. Today I am extremely tired, sore, foggy, etc etc but I don’t care. I’ve achieved something. I made it to a wedding! I spoke to friends! Everyone was so understanding and looked after me the whole way through the day, I couldn’t have done it without them.

Thankfully I don’t have any other big days lined up for the next year! I know I pushed myself too far on Saturday, I know I couldn’t handle anything like that again for a very long time, but I did it! Yes I’m living with the consequences now but for once it’s worth it – I was there on their special day!

Congratulations again Mr & Mrs Bowie!


PS I just wanted to add that days like Saturday make me realise how much people care. It’s easy to forget that when you are lying in bed. I’m very lucky to have some truly wonderful people in my life, even if I don’t see them nearly as much as I would like. Thank you all for being there for me, for helping me on Saturday and for talking to the foggy brained zombie in the corner! 🙂 xx


Pinching Myself

I’ve just stopped shaking so I can write this post. Last month I wrote about Life’s Victories – those little things that just make such a difference to your life. Well since I blogged I’ve now got my flashy new wheelchair! This wheelchair has big wheels so I can self propel it and not feel quite so useless when going to the loo etc …. getting someone to park me in the loo then negotiating things to lock the door wasn’t much fun. Now I can wheel myself through that door – YIPPEEEE

Anyway, earlier this afternoon I got a phonecall from my clinical psychologist (C.P. from now on). I had a momentary panic as I thought she was calling to postpone our appointment this week and to be honest I’m actually really looking forward to it. Well that’s not why she was calling. She wanted to give me a “heads up” as she had just spoken to social work about getting us some kind of help in the home … not “home help” as she knows I would hate that but maybe some equipment to help make both my life and J’s life a bit easier.

“There’s one thing though Rhoda, you have to be specific. I know you hating asking for help but you have to tell them how it is on your worst days.” EEEEK, I’m rubbish at that, I’m so used to putting up this front that everything is fine and dandy that when I’m asked to be honest I find it really hard, I’m always trying to put a “cheery” spin on it.

Anyway my C.P. assured me that we would talk through it all at the appointment and I wasn’t to worry just give it some thought. Cool, I can do that.

Two minutes later my phone rang again, it was the social work department. Now I am terrible at talking on the phone to people I don’t know, I get my words all twisted, I feel embarrassed when I can’t remember what I was just saying, I find it hard to concentrate on what they are saying….etc. So you can imagine that I kind of freaked out when I got the call.

The lady however was lovely. She said she understood how hard it is to describe things, she wrote down everything I said and she promised that someone, maybe herself, will be coming out to see us and to see what they can do to help us. AMAZING.

I put down the phone shaking. This is such a big thing in our lives and will make such a huge difference to the way we live.

No sooner had I taken a few deep breaths to calm down than she phoned again to say that she would be sending someone out to help us fill in some forms. She gave me a time and date and said we’ll get out to see you soon.

I put down the phone and tried not to cry. They were tears of relief though. It feels like someone has just lifted a small house from my shoulders, maybe not completely it’s kind of just dangling above now but it’s better than it was.

I’m now sitting here pinching myself. Are we really getting some help? Do the authorities actually care? Well it seems that my C.P. does because without her none of this would have happened!

Hopefully next month I’ll have some progress to report, but right now I’m just so grateful to my wonderful C.P. for caring and helping, and most of all for understanding. Thank you.

Hope Shines Through

Just a wee post today. I’m not quite sure if it’s going to make any sense as my brain isn’t really working but I felt I wanted to write.

For the past week I have had severe pain. I spent last week in bed and have now progressed to the couch. Dealing with pain can be really tough. I tend to think that I am used to it as I am generally constantly in pain, but every so often it escalates to the point that I have tears in my eyes, painkillers in my stomach and splints on my wrists.

Being in constant pain obviously takes its toll and as a consequence I get extremely tired (even more so than usual). It’s hard to stay positive at times like this but I’m quite pleased with how I’ve coped the last seven days.

One of the things that has really helped me to get through this is a girl called Sam. Sam lives really nearby but we have never met. She has M.E. and runs a local support group – which I am DETERMINED I will get to one day….I was too ill last Wednesday to make it. Sam has a brilliant blog which I urge you all to visit. She has written some great posts and posted some amazing vlogs too.

On Friday Sam did an fantastic thing. Something that gives me so much hope – she RAN with the Olympic torch! Right now I can’t even imagine what it would be like to run a metre, but Sam ran a mile – a WHOLE mile, while carrying the Olympic Torch!

What is particularly amazing about this is that not so long ago Sam was walking with two sticks.

I actually cried when I saw what Sam has achieved – bloody hell I have tears in my eyes right now just thinking about it! At one point Sam was in hospital unable to use her legs….and now she is RUNNING!!

I just find this inspirational. Sam proves that people with M.E. can improve. You can tell from her blog that she is a very determined lady and she has worked hard to get herself where she is right now. It gives me hope.

So as I lie on the couch with pain throughout my body I am thinking of Sam. I’m thinking of the huge achievement of a lady I’ve never met but who has inspired me and given me hope that maybe this wont last forever.


Image from the Sam and Me Facebook Page.