Category: My Open University Journey Page 11 of 16

Well it’s been longer than I intended but I have finally found the time and energy to update this!

I managed to get to the coast – we went to Clacton on Sea for the day and although I spent the entire time in the wheelchair it was soo good to get away from the house and stress even if it was just for the day! The sea air was amazing as well and I got lots of photos which I keep looking back through on the rough days I’ve had since. Amazingly had very little payback from the trip out but I was ultra careful during the trip and the days after.

I also had a wonderful time with my friend that week when she visited bearing gifts! SO very lucky to have her!! Hopefully we’ll be meeting again in the next couple of weeks.

Had a bit of a rough time these past few weeks though – been a bit of a rollercoaster with all the up’s and down’s!!

A week after making it out to the coast I got a nasty virus which I’m still fighting the tail end of now. That wiped me out for about a week, and a horrid time of it with my neighbours making a lot of noise really did not help matters. In fact one day I just wanted to sleep but they made that absolutely impossible.

Things picked up and I made good progress on study and started catching up on things too. Then things with the neighbours got worse again and things just went downhill rapidly until the end of last week. Now things are started to look up again, but I’m still catching up with emails etc.

New friends, support from fellow Spoonies and health improving ever so slightly – kicking this virus – has made me feel much more positive.

Today I’ve achieved something major – for my uni assignment (TMA05) I had to code a video made from still images with sound. Mid-last week I was panicking I hadn’t even started it, but with dedication, determination and probably spending a bit too much time on it at times, I have completed the video this afternoon!! Still got a question to do but the bulk of the work is now done. Fingers crossed it’ll get a good mark!

Anyway I think that’s all for now, I aim to update this again soon. As always feel free to comment or tweet me @SmilingClare

Challenging?! Probably the best way to describe things these past few weeks. Had a few rough days and going through another one today.

Anyway I’m still stuck on the crutches around the house and only using the stairs first thing in the morning and last thing at night. Spending most of the day lying on the sofa or sitting propped up with my feet on a foot stool.

Most of my time has been spent studying, getting my latest assignment done and dusted. But today I submitted it for the Friday deadline! All ready to sleep for a bit now but there was music pounding through the house making that impossible so here I am blogging!

Last weekend I got OUT – Major achievement considering everything recently. And yes it’s probably ridiculous that I got so excited about a trip to a supermarket home store, but in my defence I hadn’t been out in the car for weeks! I went round the ground floor of the store in my wheelchair and wearing dark sunglasses, didn’t venture upstairs as I don’t like lifts and couldn’t get up there otherwise! I went a bit mad and bought 3 new tops for my already bulging wardrobe but hey I don’t get out much! And they were in the sale – what girl could resist?

Visited my grandparents on Monday and had lunch there. Not surprisingly I was pretty exhausted most of last week and crashed Thursday night. Not too badly but enough to say I’m going to have to start taking it easy again.

Also had a tearful heart to heart with my Dad and then my Mum on Tuesday about how ill I really am and how little I can do right now. Shared my worries for the future and current ones about studying. It really helped me to get things off my chest and get some reassurance that things will be okay. Whatever happens I’ve got them to help me through.

One friend said to me when I mentioned that I’d been wondering why I put myself through studying: “Easy – you don’t let this illness define you” And I guess they’re right, no matter how tough things get I’m determined this illness isn’t going to stop me. I’ve just got to find that balance between living my life, not letting this illness define me and making sure I get enough rest to improve so I can live a more ‘normal’ life. That in itself is the challenge that faces most people with ME or any chronic illness really.

I’m off to get some of that much needed rest now! As ever feel free to leave a comment or tweet me @smilingclare