Category: ME Awareness Page 5 of 13

Television Woes

On 10th July 2015

Most days I can’t watch TV past a certain time of day, usually 8 or 9pm. Especially but not exclusively if I’ve watched some during the day. Time at computer screens also seems to impact on my ability to cope with the television.

This is a difficult aspect of M.E. to explain. Most people sit down, turn the television on and watch a good program classing it as a restful and relaxing activity. But when you have M.E. that isn’t the case, in fact sometimes it can hurt to have the TV on.

And this is what I am finding at the time of writing. It reaches a certain point in the day, well more accurately evening, and I can’t stand having the television on. It physically hurts my eyes and head to watch it, or even be in the same room with it on. It’s almost like my brain can’t cope with the moving images and flashing lights that come with having the television on, in short it makes me feel a lot worse and so I avoid it.

This means the online catch up services have a steady demand from me during the day as I catch up with the shows I want to see but am physically unable to watch in the evenings. You see for some reason, seemingly unknown to me, I can cope with the TV during daylight hours. However once it starts getting late and the light changes it’s a different story. Whether it is the lighting; natural light making it easier to cope with the flashing lights/images of the TV or whether I just reach a point of exhaustion which means my brain literally just can’t cope with it I don’t know, I can only guess.

I’m currently awaiting new glasses, adjusted for my astigmatism, and I’m hoping they might help; perhaps it’s just my eyes having to work harder and getting tired that causes the problem. Like I say I really don’t know what the cause is, I just know it’s immensely frustrating not just for me but also for my family, since I have to leave the room most nights if they have the TV on past a certain time, other nights I can cope. It all seems to depend on what I’ve done that day and how long the program is on for.

Why am I writing this post? In an attempt to explain something I’m facing everyday, to make people more aware of every aspect of M.E. even the one’s which seem most unusual and difficult to explain.

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I was a Princess for a day!

By Clare

On 14th May 2015

In Fundraising, ME Awareness

The title of this post says it all. On May 12th 2015 I dressed as a Princess for the day in order to raise money for the small charity with a big cause: Invest in ME. I was overwhelmed by the support I received in doing this, and the donations that seemed to flood in!

As promised here are some pictures from the day…

Just after getting dressed up

Smiling for the camera!

One may have been a Royal Princess for the day but one still had to study

A Princess Selfie

Having spent most of the morning switching between posting on social media sites and working on my End of Module Assessment for uni (not an advised combination by the way!) I was beginning to feel exhausted…

Beginning to feel pretty rough, mid afternoon

Overall it was a brilliant day and I managed to raise £207 in online and offline donations! I was (and still am) overwhelmed by the support and donations I received. SO if you’re one of those lovely people who donated THANK YOU so much, you are amazingly generous people. If you’re a bit late to The Princesses and M.E party then you can still donate by texting PCJW78 followed by £1, £2, £3, £4, £5 or £10 to 70070 (e.g. PCJW78 £3 to 70070) or by visiting my JustGiving page: http://justgiving.com/PrincessClare

Sadly all good things must come to an end, and my day ended with a bump. Tripping over my own dress, breaking its strap and landing on the floor has only served to cause a certain amount of laughter in my household and a fair bit of pain (on top of the flare in symptoms for being so active online for the day) At least no one can say I didn’t suffer for my fundraising event!!

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#ThisIsME

By Clare

On 13th May 2015

In ME Awareness

I’m a day late with this one, so I’ve changed one or two details to reflect that; rather than for International ME/CFS/Fibromyalgia Awareness Day I’ve changed it to Awareness Week. But the important thing is I’m joining in this blog chain created by Louise on http://www.getupandgoguru.com/

This Is M.E

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). A new name that has been put forward in recent times is Systemic Exersion Intolerance Disease (SEID) (love it or hate it as you may!). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.
As part of International ME/CFS/Fibromyalgia Awareness Week, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.
Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this on to anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you!

What is your name & how long have you had ME / CFS?

I’m Clare and I’ve officially had ME for 10 years as of today.

Where do you live? (Country, State, City – however detailed you want)

I live in Chelmsford, Essex, England.

Age (if you’re willing to share)

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

1. I love gardening. Every Spring I sow fruit and vegetable seeds in order to grow my own throughout the Summer months. There’s something rewarding about growing your own food, and generally it seems to taste so much better than the supermarket bought items!

2. I love Disney films, especially musicals! Frozen, High School Musicals and Camp Rock live in my DVD collection!

3. I’ve been blogging for three years now, and love every minute of writing blog posts. Writing my thoughts out online like this somehow helps me deal with anything that’s going on in my life. Some people like talking, I prefer typing.

4. I’m hoping to set up my own business from home once I finish doing my degree. I’m not too sure of the details just yet but it’s the only way I can see of earning an income.

5. I love making things; knitting and sewing are just two of my hobbies relating to this. I love a hand knitted jumper or doing tapestries in my spare time. I hope to start quilting soon.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

1. I have to have my parents help me with a lot of basic tasks when I’m at my worst. Showering, dressing, brushing my hair and cutting up food are just some of the tasks I can’t always complete myself.

2. I do not receive any benefits, despite being unable to work. I am completely dependent on my parents for everything financially, which just makes me more determined to find a M.E. friendly job or build a business myself so I can be financially independent.

3. I try to be as open and honest about my symptoms and illness when writing online but in person I often try and appear as normal as I can. To the best of my ability I hide all my symptoms, so to an outsider it can look like I am perfectly healthy. In reality at the very least, I am always in some level of pain. If I hide how I am for too long I inevitably end up feeling a lot worse when I drop the act as the symptoms I’ve been ignoring during that time hit me full force.

4. All my activities are carefully planned and managed. Not because I’m a control freak but because it’s the only way I can keep my symptoms at a manageable level. Without doing so would cause me to do too much and my illness would become a lot worse. (I’ve learned that from experience) Don’t get me wrong I still do things which are technically too much for my body to handle, but a day or two of light or no activity has to follow in order for me to maintain the status quo of symptoms. And by activity even things like washing and dressing have to count.

5. I never know what each day might bring. Even with being ultra careful managing my activity levels I never know what I’m going to wake up to. Sometimes a day of resting can mean the next day I will be able to manage what I consider a normal level of activity, other times I can wake up feeling worse. There are days when for seemingly no reason I feel like I’ve been hit by a truck and I’m forced to cancel any plans I had for the day in order to rest and relieve those symptoms. Unfortunately there are also days when the plans are unchangeable and I have to push through the symptoms, making the following few days a lot worse.

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

It’s a constant challenge. It often feels like you’re struggling to keep your head above water; every time you see the slightest hint of improvement it can be cruelly snatched away. There are many times you feel like giving up altogether. You question the point of living a life when so much of it seems to be wasted on doing nothing, resting, in the hope that by doing that you will recover to the point of being able to live life again. You spend the majority of your time just existing, unable to join in the things going on in other people’s lives. But you do your best to live your life to the absolute max of your ability. That might not mean the big things other people would think it does; it could just be getting out of the house for 10 minutes, or going to one shop in a wheelchair. While doing that you hope that one day your absolute max will increase to mean the big things it does to everyone else.

What is the most frustrating aspect for you of living with ME / CFS?

There are so many frustrating aspects it’s difficult to pick one. I think the most frustrating aspect of living with this illness is my dependence on my parents – financially and otherwise – at 22 I should be washing and dressing myself, earning a living, cooking for myself. Basically being a lot more independent than I am, yet this illness has left me completely dependent on them for seemingly everything. I am immensely grateful for the fact they do so much for me, stuff no parent should have to do for their 22 year old daughter.

Anything else you’d like to say before finishing?

I can’t remember what it is like to be healthy. To be pain free. To be fatigue free. To not have to carefully balance activities and rest in order to maintain the current level of health. I cling on to the hope that one day I will rediscover what it is like to be healthy.

Contact details (if you want to give them) – blog, Twitter, FB etc

Blog: www.alifewithinanillness.blogspot.co.uk Twitter: @ALifeWithinME Facebook: facebook.com/ALifeWithinME

Any other bloggers who want to join the blog chain, please copy this and fill in your own answers. Then email Louise@GetUpAndGoGuru.com or send Louise a Tweet so she can link to your blog post in her original post.

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A Day In My Life…May 12th 2015

By Clare

On 12th May 2015

In A Day In My Life, ME Awareness

As I’ve done for M.E. Awareness Day the past two years, today I’m going to share what it’s like to be me for the day.

Up until a few weeks ago this would have been a much more positive, less symptomatic account but unfortunately after receiving the news that my Nan had passed away my health took a nosedive so this account isn’t what I was expecting to be writing:

I wake feeling unrefreshed, after about 9 hours sleep. My body feels heavy and almost everywhere hurts. I slowly sit up and wait a few moments before attempting to get out of bed; too fast and I feel faint. I gather together the things I expect I’ll need downstairs for the day: clothes, my phone, a book, a blanket and often a cuddly toy friend into a bag and make my way downstairs leaning heavily on the hand rail for support.

I get my own breakfast, standing leaning on the worktop for support, then I get washed and dressed with the aid of a helping hand or parent to dress my lower half. After that I get on with a few hours study, currently this is done from the sofa when possible. I take regular breaks within this period as my concentration doesn’t last for that entire time.

I get lunch in the same way as I got breakfast, before taking an hour or so rest, normally watching the Australian soaps on TV. I often spend the rest of the afternoon doing something which takes little energy but is productive; this could be putting photos in a scrapbook, planting seeds, blogging or knitting, it all depends on how I feel.

Evenings are my worst time, my parents will cook me dinner which is eaten on the sofa, I’ll get into my pyjamas often requiring the help of one of my parents to change my bottom half. I’ll lay on the sofa reading a book, listening to music or play a game of cards with one of my parents.

Come ten o’clock it’s time to head back up the stairs to bed. This is often a struggle, my legs are incredibly heavy and painful so lifting my feet onto each step is incredibly difficult. For this reason one of my parents has to help me up the stairs. I get into bed, write in my journal before trying to get comfortable and letting sleep claim me.

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I can handle with no negative effects on my health. Anything more and I pay the next day.

As always it’s taking some time to get used to needing so much help again. It’s been a while since I’ve needed help getting showered and dressed and I am forever grateful to my parents for helping me out at times like this. I’m hoping things will pick up in the coming weeks and months, but for now I just need to cope with how things are and balance my activity levels in order to get myself improving again.

Some things haven’t changed since last time though, so I shall quote from my post back then:

“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”

Remember I’m spending today dressed as a Princess to raise money for Invest in ME a small charity funding vital biomedical research into M.E. If you can afford to sponsor me you can donate via text by texting PCJW78 followed by the amount you want to donate (£1, £2, £3, £4, £5 or £10) to 70070 (e.g. PCJW78 £4 to 70070) or head over to my JustGiving page: http://www.justgiving.com/PrincessClare If you cannot afford to donate please share my story and help spread awareness. Every donation and share will make a difference. Thank You!

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