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Invisible Chronic Illness Awareness

Posted in Personal Blog

The months seem to be merging into one another, time is passing quickly and we are almost in May once more.

Many illnesses have their own awareness days, weeks or months. May is significant for our family as it celebrates the awareness weeks for both M.E. and Mental Health, both of which our family have to face day in day out.

I had a quick search (and apologies for any I have missed) and found the following awareness, days, weeks and months which are celebrated in the UK during May: ~

Awareness Days for;
2nd May: World Asthma Day
10th May: World Lupus day
12th May: International ME Awareness Day
17th May: World Hypertension Day
18th May: World Aids Vaccine Day
19th May: Spinal Cord Injury Awareness Day
20th May World Autoimmune Arthritis Day
29th May: World Digestive Health Day
31st May: World MS Day

Awareness Week for;
Wed 3rd ~ Thu 11th May    Dystonia Awareness Week
Mon 8th ~ Sun 14th May    Action for Brain Injury Week
Tue 9th ~ Mon 15th May    Coeliac Awareness Week
Thu 11th ~ Wed 17th May    Huntington’s Disease Awareness Week
Thu 11th ~ Wed 17th May    M.E. Awareness Week
14th ~ Sun 21st May    Arthritis Care Awareness Week
Mon 15th ~Sun 21st    May Dementia Awareness Week
Mon 15th ~ Sun 21st    May National Epilepsy Week
Tue 16th ~ Mon 22nd  May Mental Health Week

Awareness Month for;
Action on Stroke
Cystic Fibrosis
Hepetitis Awareness
Lyme Disease Awareness

I noticed, and it’s quite apt I suppose, that my birthday (17 May) falls within both Mental Health and ME Awareness weeks ~ the powers that be must have known!

*clears throat*


As a family we are huge advocates of spreading the word, raising awareness and fundraising for our chosen charities because they are so underfunded and yet the work they do is so desperately needed. It is amazing how many folks we have come across within the medical profession who have no clue what ME is ~ that pretty much astounded me. Also what deflates me and makes my stomach drop is when they have heard of it but they either choose not to believe it exists or that it is a psychological illness and therefore to be treated by graded exercise therapy (GET) and cognitive behaviour therapy (CBT). Both of which in the early days we were involved in, with the result of worsening our condition, not improving it ~ nor a cure as they would have folk believe.

Very few health care professionals are aware of the severity of the illness, how to help relieve symptoms and offer the patient support and understanding. Having someone say “I believe you” and that they understand the full diagnostic criteria for diagnosis and symptom awareness, how to help (other than forcing GET and CBT) is incredible. This is why raising awareness is so very important to me. If it isn’t getting through to many doctors and nurses then how in the heck are we supposed to get the general public to be aware too. So many people say “yeah, yeah, you have ME, that’s what lazy folk say to get off sick and claim benefits. I would love to stay in bed all day and be lazy like you.” Which drives me nuts! Also when people say, “oh did your girls not like school then”, assuming they were taken home to be schooled and not have any social life or peer interaction because they didn’t want to go to school ~ oooh ~ makes me want to rant!

*Reining it in*

SO for this years ME Awareness project I decided I would make a new awareness video, to try and get the message across to anyone who didn’t know ME existed, or if they did, thought it was just being a “bit tired or something”.  This was a first for me, a daunting task but I powered through it with the odd sigh and eye roll from youngest child, who gave me some helpful instruction so I could manage to create my first ever video.

Now it’s no professional work I have to admit, but you can only work with the tools you have, mine being a foggy brain and complete lack of tech skills. You will most probably spot the odd typo within the text because I typed up all the slides myself and YES I am patting myself on the back! It was an arduous task, firstly I tried to save time and copy and paste but it was too small to read when in the video and like a numpty I had made some slides portrait and others landscape ~ complete dufus! So that video was rubbish as half the portrait slides were cut off. THEN I redid all the damn slides to make them uniform and landscape, and manually typed up all the text into the little blue boxes which were my chosen frame (blue is the colour for the ME awareness ribbon). Finally, I thought I was done. BUT NO I had somehow managed to put some of the slides in the wrong order ~ doh! So back to editing and finally, finally, I managed to get them into the right order, with the right transition times and static times (I hope), plus tried to blend the loop of the music to fit the video as best I could AND I KNOW the end is a bit ropy ~ but it was the best I could do! THEN and no matter how many times I proof read it, I still somehow managed to miss some errors. BUT having had to re~edit it numerous times and re~upload it 3 times already, I have downed tools because I am spoonless, all used up and some ~ plus I have lost the will to live and may end up throwing my computer on the ground and stamping on it. The call has been put out for chocolate, the only medication left available to me when times are hard like this. The smooth velvety welcome of its embrace, the delicious unctuousness of it, the delight as it slips down my throat and reach out for the next piece. *sigh*

Anyway, where was I? Oh yes…

I hope after all my hard work and befuddlement of my little grey, depleting cells, that you enjoy the final result. I hope that you find it informative but not boring, to have managed to convey to the uninitiated in ME what it is, how it affects us and why we support the charities we do. This was the 3rd awareness video we have uploaded but my very first at creating and making one all by myself.

*waits for applause to die down & nods in acknowledgement back at you*

So after much ado, here it is…

The next video was the first awareness video we shared, it was made 2 years after Tara was diagnosed with ME and was pretty much housebound with the exception of wheel chair jaunts driven by me, now don’t worry I can assure you she was perfectly safe ~ the wheelchair has a seat belt! However, this one was made solely by Tara, in a bid to explain to her peer group why she was no longer at school. It was a stop animation video, which she made on her own over a period of weeks. It shows her feelings about the illness, how she coped and what she felt. It was originally set to a song by Dido which suited it perfectly but we had to change it to a YouTube copyright free option because of the copyright issues on Didos song.

So I give to you Taras 2012 ME Awareness Video…

The second awareness video was a collaborative effort between Tasha and Tara. This was because by that time Tasha had fallen foul of the illness too, following her viral meningitis and scarlet fever which she had made her severely ill. The strain on her immune systems was too great and she developed ME.  Which was a right bugger I can tell you because she had to withdraw from school and a social life as her health nose dived. At one point she was partially paralysed and had a bed cradle as the weight of her bedclothes caused her too much pain and we had to buy exceptionally soft pj’s for her too as her skin felt like it was on fire and burnt.

They thought long and hard about what they wanted to say and how they wanted to convey it. Then they gave a holla out to myself, Dave and Keisha because they needed our hands to help make the signs. Being the fabulous supportive folk we are we obliged and settled down round the dining table, heads bent, hands working with black sharpies and wads of paper ~ it is fair to say we had cramped up hands and were surrounded by debris of crumpled up paper and worn out sharpies by the end of it all.

This is the result of their hard labour, again it’s a different take on how to share with their peers what they were dealing with and how their lives were affected by the illness. They decided not to speak but to simply stand in front of the camera and hold up the signs to share with you their message.

So here it is…

Now aside from creating my first ever video, as if I haven’t banged on enough about it ~ I am walking, along with my game and supportive hubby Dave, with our two Hairy Boys, Taylor and Loki, somewhere around Glastonbury in the first week of May to participate in the now annual “Walk for ME” team event. We have been joining in with this fundraiser ever since it started. Sometimes the whole family, other times just a few of us. Last year I did it alone with my walking stick and many many pit stops to rest. It had me off my feet afterwards with post exertional malaise for days but it was worth it.

I digress ~ so as I was saying, we will be walking somewhere in Glastonbury because that’s where we are going for our Tasha to attend a week long piercing and dermal course. We have booked a cottage almost next door to the building where the course is being held, so will be tootling about the area when Tasha is studying. Having never been there before the route will most likely be totally random, with many a pit stop for me to rest, hobbling along with either my stick or crutches plus wearing my ever faithful ankle and wrist supports. I am pretty sure though that we will wind up in a pub at the end, it is essential to keep your fluids up when partaking in activities such as these. Plus, I am pretty certain, either cake or pie will be involved somehow ~ critical for energy boosting properties, much better than say a banana!

I have decided, you lucky folks, to share with you my fundraising page, just in case you feel so obliged to either share it, or even better share it and donate a wee something. The charity I am fundraising for is working so damn hard on research projects, conferences and reaching out to the medical world on our behalf to update them on all news relating to our illness. Plus, to any of you who do donate, I shall write about our walk, with pictures and everything, to let you know where we ended up going, how far we got and possibly also some food porn for you too ~ what more could you ask for?

Back to the fundraising page, you can access it by clicking on the link here. Also, if you would rather option to donate via text, go on you know you want to, then this wee image shows you how, obviously the amount doesn’t have to be £5, it can be more or less, depending on what you can afford…

text code

*climbs down off soap box*

That’s about it then folks, that’s my awareness campaign for May. Usually, had my health been better, I would have done more, but I can only do my best and so this is it.

Thank you for reading to the end of this blog ~ and watching the videos or clicking the link. Your support is always enormously appreciated and never taken for granted.

‘Til next time, hoping the sun comes out, the days are warm and you enjoy whatever it is you like doing to the max.



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