Smiling Clare - Part 48

On the up…of a fashion…

On 30th April 2014

In ME Awareness, My Open University Journey

Soo I guess a lot has happened since I last posted about how my life was going. I’ll try and keep this as brief as I can.

I’ve recovered from the shingles; have a few scars and still get the occasional bout of nerve pain but I’m over it. And I’m now slowly getting myself back to some sense of ‘normal’ it’s taking time and it’s not without its obstacles (namely more bugs) but I’m managing to improve and feel more ‘stable’. I’m in control of the M.E. for the most part.

On April 19th 2014 I managed to attend a 6 hour tutorial for my Open University module – MAJOR achievement! You can read more about my experience and see my top tips for managing here.

My life has and still is revolving around my course work and studying. Although now it’s revolving around revision for my exam in June. I have been managing to spend the odd afternoon out in the garden tending to my vegetable patch – I don’t do any of the hard work but have planted some seeds and sit at the edge and weed etc. when I can.

I’m also making plans for the future and taking tentative steps towards it. I’ll post more as things take shape but the plan is to slowly start building my own business. Right now it’s only in the brainstorming stages and I don’t know if it is possible while I’m still doing my degree but a girl has to earn a living somehow!

I’m busy working on a post for M.E. awareness day; May 12th if you’ve forgotten! But in the meantime there is a group of lovely M.E.’ers who are spending the day dressed as Princesses to raise money for Invest in M.E. You can donate to their JustGiving page here: http://www.justgiving.com/teams/meprincesses and find their Facebook page here: https://www.facebook.com/meprincesses If you can’t donate please share their page with others as it’s not all about the money raised; awareness of M.E. is just as, important!! So please support #TeamPrincess in any way you can! Thank you!!

I think that’s all there is to say for now. I’m taking things relatively easy right now, I don’t want to go back to how I was and still have days which scare me. Actually I have moments in the evenings that terrify me, but they’re usually due to tiredness.

Anyway onwards and upwards from here. As always feel free to comment below or tweet me @SmilingClare

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Top Tips for Long Tutorials (or any tutorials really)

By Clare

On 23rd April 2014

In Essential Living Aids, My Open University Journey, Studying

Anyone who follows me on Twitter will likely know that on Saturday April 19th I attended the final tutorial for B203. For most people this would be seen as a normal thing, just another appointment to make space for, nothing to be majorly proud of. But not for me. For me the fact I managed to get to the room, lasted for the duration (almost 6 hours) AND enjoyed myself was nothing short of a miracle. I hadn’t been to any tutorials since the first one in October and they were 3 hours long. So to say I am proud of myself is an understatement.

I learned a number of things that day and they weren’t all related to my course, however there was some really useful tips for revising for the exam! One major thing I learned is that not all ramps are wheelchair friendly; again we had a room at a hotel in Chelmsford (not the ballroom this time round tho!) Getting into the hotel wasn’t a problem, it was entering the allocated room which proved challenging. The ramp was at a 30-40 degree angle. Far too steep to get a wheelchair up or down without the occupant being flung from the chair!! This we learned the hard way with my Dad attempting to push me up or down the ramp, me ending up halfway out of the wheelchair before we realised that the ramp was too steep and the foot pedals of the wheelchair were getting caught. In the end Dad rolled the wheelchair up on it’s two back wheels (with me in it, of course!). But that shouldn’t be the case and that ramp should be less steep so the room is easily wheelchair accessible.

Anyway I thought I’d put together a list of things I did to help ensure I was able to last the day, as well as things I’ve thought of since that would have made coping that little bit easier:

Make sure your tutor is aware of your illness and how it affects you.

I’ve always made sure to be open about my M.E. to my tutor and fellow students on my Tutor Group Forum. This way there is less explaining to do if you have to leave early or have a break; in fact throughout my tutorial my tutor regularly checked if I was okay and asked if I needed a break!

If necessary go in your wheelchair.

Not only does it conserve energy on walking to the room but it also ensures you have a chair you know you can sit in for a long period – I don’t know about anyone else but I find certain chairs much more tiring to sit in than others. Taking my wheelchair means I know I can sit for a certain amount of time without too much problems.

Take cushions for the chair/wheelchair.

If these make your wheelchair more comfortable, or are likely to make the chair there more comfortable take a cushion (or two!). I only took one for my wheelchair and in hindsight I’d have been better with two or perhaps a different cushion to support my back for that length of time.

Take some spare painkillers with you.

You may end up looking a bit strange, popping pills mid-tutorial. But if it means you’ll be able to stay longer who cares?! Two and a half hours into my tutorial I found I needed some painkillers as my back was starting to ache from sitting up so I took some paracetamol which I generally always have stashed in my handbag. It meant I didn’t have to go home early.

Take a packed lunch, drink and snacks.

While most people will probably pop out to get something to eat during the break, or take their lunch out to the cafe area (if available) I found it best staying put in the room with my own packed lunch. Not only did it mean I didn’t have to use energy moving to another part of the hotel, it was also quiet with no hustle and bustle so I was able to have a short rest as well. Some of my fellow students stayed at the beginning of break to keep me company and some came back once they’d got some lunch from local shops. But I was still able to get a short rest in between; this I think was quite vital to my ability to stay the whole time.

Bring some headphones for your smartphone or an MP3 player with you.

This is something I didn’t do on the day but wished I did. During the break I was alone in the room for 15-20 minutes while everyone else went out to get lunch etc. This time wasn’t unwelcome as it gave me time to rest with no noise but a relaxing track on my MP3 player would have been just as good (and may have made that time seem less long).

Only take the minimum amount of books needed.

Obviously the best thing to do is to check with your tutor what you are required to take, but then only take that – the more books to carry and organise, the more energy you’ll consume. So anything your tutor doesn’t think you’ll need, and you’re only taking ‘just in case’ leave at home! It’s taken me a couple of modules to realise it is not necessary to take the majority of my course books with me! I only take what my tutor says they plan to cover at that tutorial.

BUT…
Doing all this doesn’t mean you won’t suffer for attending the tutorial. It will hopefully minimise the effects. I’ve suffered more than I expected to but I always knew 6 hours was pushing my luck! However it was totally worth it as I got so many tips for my next assignment and for revising for the exam.

That’s all I can think of for now, if there’s anything else I’ll be sure to revise this list! I hope they’re of help to anyone facing a tutorial with a chronic illness even if it isn’t M.E.

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My Nominations for The ME & CFS & FMS Blogger Awards

By Clare

On 16th April 2014

I was kindly nominated for ‘The ME, CFS & FMS Blog Awards’ by Barry Evans, who said these lovely words about both my blogs:

“Clare has had a difficult start to life, she was diagnosed with M.E. at the start of secondary school and was bed bound for 3-4 years whilst studying for her GCSE’s. Clare improved for a couple of years after that but deteriorated again after that. Despite this, she has the added pressure of doing her degree. Clare’s blogs offer a thorough insight into her life bit by bit. In particular, “Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business” shows the struggles that occur whilst studying and is something students with M.E. can relate to.”

I think the whole blog awards idea to help raise awareness of these conditions is a brilliant idea! Please find the rules of the awards at the end of this post.

Before my nominations…I’d like to share Barry’s insightful blog http://barrysme.blogspot.co.uk/ Not only does it provide an insight into Barry’s life but there are also posts on things that are difficult when living with M.E. or the like. His post on deteriorating friendships I can particularly relate to.

So my nominations are:

Hayley-Eszti http://hayleyeszti.blogspot.co.uk/
In her blog Hayley shares her experience of having M.E and the troubles it brings. It also provides an insight into her life and some tips for positivity among other things.

Anna http://www.lifeintheslowlanewithme.blogspot.co.uk/
Well what can I say about Anna’s blog? It provides an insight to the life of someone with M.E. and she is truly an inspiration to me. Anna and her friend came up with what is fast becoming my weekly highlight: Chipper Tuesday (See her post here) A day where those with chronic illness are invited to wear something they don’t usually wear…something which gives you a sense of normality.

Ali http://beingamummywithme.blogspot.co.uk/
This lovely lady gives an insight into being a Mummy while having ME. She invites guest bloggers too – from Daddys. For me it provides a helpful look at how it’s possible to be a parent and be ill. Gives me hope that perhaps one day I’ll have kids and be able to manage!

Charlotte http://mookpixie-infofreak.blogspot.co.uk/
Charlotte’s latest posts of poems really describe living with ME and also provide positivity. I love reading through them; especially on days when it feels like ME has won.

Mary http://merrydholl.wordpress.com/
Mary is relatively new to the blogging world but her posts offer tips to try and make life easier as well as descriptions of her experiences, of which many of us can relate to.

There are many more amazing ME bloggers out there and I read many more blogs but unfortunately I simply don’t have the energy to nominate them all, so if you’re not mentioned it’s not because I don’t read your blog, or don’t deserve to be nominated; it is simply a case of me attempting to manage my spoons!

And finally the rules…

ME & CFS & FMS BLOGGER AWARDS:

Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS) and/or Fibromyalgia (FMS).

The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.

It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves. No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.

HOW IT WORKS:

1, On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award. The page will also include this set of instructions and the two award images.

2. Please note, you do not need accept the award. The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.

3. To claim your award:

a) Create a new post on your blog, in which you thank the individual who gave you the award (remember to include a link back to their blog). You can then copy the images to your blog post and/or side bar as you wish.

You may need to click on the image and download it, before putting it into your own post.

Below is the code for adding the small image as a link in your blog side bar if you wish to do so:

b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special. A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.

c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don’t copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. 😉 )

d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs. The comment could simply read:
“Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD. Please visit <insert link to the post you have just created> to collect your Award”

3. Hopefully these awards will spread far and wide. I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.co.uk/2014/02/launching-me-cfs-fms-blogger-awards.html
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.

THANK YOU ALL FOR PARTICIPATING.

Sally
http://sallyjustme.blogspot.co.uk/

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When life gets hard, bury yourself in studying!

By Clare

On 14th April 2014

In My Open University Journey, Studying

Well it really has been too long since I updated this blog. I’ve had two assignments marked since my last post! The first one is for the Accounting and Finance assignment and despite having fallen behind I got a respectable 77%.

Now Human Resource Management, Block 5…that was another real struggle. I learned a lot about theories on the management of human resources as well as the fact it really isn’t a wise idea to try and continue studying on less than four hours sleep whilst battling shingles!
So block 5 was another one where I fell behind. I somehow miraculously wrote my assignment in about three days and submitted thinking I hadn’t answered any of the questions at all; just written absolute nonsense. You can imagine my surprise when I got my mark back and found I’d got 74%! It just shows what I thought was ‘nonsense’ actually made some sense! Perhaps I should have more confidence in what I write.

Anyway I’m now well into Block 6, Information Management. I have to say I’m finding this subject interesting but again the workload is a challenge. I’m just recovering from a sickness bug which has totally flattened me; making the M.E. symptoms ridiculously bad and leaving me feeling like I’ve fallen behind. Luckily for me the study calendar has allocated a ‘break week’ next week so I have time to catch up before the TMA is due! Hopefully I’ll avoid pushing my health so much and writing another TMA in just 3 days.

Quite honestly I’m finding myself regularly buried in my OU books; when I’m not buried in them I’m attending dentist or doctor appointments, am literally too ill to do anything but rest/sleep or I’m thinking about all the work I have to do!

No one ever said getting a degree with my health the way it is was going to be easy, but at the time of signing up I didn’t foresee my health declining as much as it has and so perhaps expected it to be a little easier than it actually is! But I’m not going to give up just yet. I’m so close to a summer break; I have one TMA due in May and a home exam at the beginning of June then I can rest and recuperate (with a hobby project or two on the go) until I start my first level 3 module in October. Hopefully by then I’ll be in a better state of mind and my health will be more stable.

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