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Would you actually want to live until you are 90? I recently had a family visit to Belfast for my nan’s 90th birthday. It was a great trip as I went with my youngest from London, my mum flew in … Continue reading
Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.
It’s called The Spoon Theory.
It explains in simple terms how we can get more people to understand M.E/CFS
Regular readers will know I have had M.E for the past 3 years. This affects me and my family everyday. I have lately introduced myself to a *cough* lovely walking stick ( Oh the Joys).
Anyway, most people hear M.E and think
‘ Oh yeah that’s the one that makes you a bit tired and lazy’!!!!!!!!
Not only would I love to change this attitude but I would love to raise more awareness about this ‘invisible’ illness. Some Gp’s don’t even recognise it and your a very lucky patient if you get an understanding GP who can direct you in the right direction for help. I have a great GP however when I was referred to a CFS ( Chronic Fatigue Syndrome/M.E) clinic my NHS borough decided they would refuse to pay for any treatment out of borough. Since then I have been left to deal with this illness in the best way I can, taking very strong painkillers and muscle relaxants to help with the pain I suffer everyday.
So take the time to take a look at the videos below which may help you understand what we go through on a daily basis.
These video’s can explain it much better than I can. I hope you have a better understanding now and no longer think us sufferer’s are lazy!!
If you know someone with M.E the greatest thing you can do is to believe them and understand.
It’s official my mojo has seemingly gone on holiday without informing me, gone AWOL without telling me when it will be back! VERY INCONSIDERATE I TELL YOU.
My last post showed I had a fab anniversary this year after 18 years of being married, check it out here
However since then I have no idea what has happened. I have hardly turned on the computer or logged onto my blog, I have tweeted the odd Tweet here and there but that’s about it. I have lost the will for anything really, I haven’t even picked up my knitting needles for around 8 or 9 days and that’s a long time as I have probably knitted everyday since the new year!
M.E doesn’t help. Lately I have been more exhausted and in more pain in my legs than normal. Maybe it’s been the weather ( as I always feel much worse in the winter anyway) as it’s felt colder and obviously wetter than what we have been used to lately.
Today I haven’t made it out of bed properly. I was up to help my eldest get ready and see him off to school. Then I took my flask of coffee up with me and went back to bed. However, when I woke and had my coffee my energy did not return. So I type as I sit here in bed with my son’s laptop and Frankie and Johnny playing on my dvd.
I am so behind with everything, the house is a mess and I have so much to do- but it’s not going to happen any time soon. I ironed yesterday which is probably why I am in bed today for so long. However, I thought I was being clever as I had set the ironing board up and used one of my breakfast bar stools so I didn’t have to stand. So I probably ironed more than I normally would.
But I have a review, a pet post, and have just become involved with #bloggingformadelaine so I need my mojo back PLEASE.
If any of you find it lurking in your cupboard, or a bin, or even on a street corner, can you please direct it straight to me…………….
Ok this might sound a little weird, but if you where asked a question to prioritise whats important to you on a daily basis what sort of things would be at the top of the list for you?
I don’t mean family or good health etc which is important to nearly all of us. I mean the selfish stuff, you know,more money, a size 8 model figure, ‘good hair’ days everyday and the like.
For me it would be a range of things. As you know I have had M.E for the past 3 years and it has significantly changed my life. I have gone from being a Qualified Driving Instructor with my own business, jogging 2-3 times a week, having some spare money to spend for the family, being active with the kids- cycling and activity holidays etc, to being unable to work, loss of earnings, unable to do activities with my boys and spending several hours a day in bed in order to get through the rest of the day. I struggle with anything physical, so cleaning, ironing, walking (any distance on some days) are pretty impossible without being laid up in bed the next day in pain and exhausted.
So the things that would make a huge difference to me would be things that I would class as luxuries- yet feel like necessities to help our situation.
1. A Cleaner- this would be a godsend and I’m sure you will all agree that it is impossible to keep on top of. But add on to that the physicality of hoovering etc for me is just horrendous. So my OH (who is an absolute star) does most of this for me- yes I know how lucky I am. However he is a VERY hardworking man working full time shift work with extra duties and cancelled days etc and thinks nothing of coming in and ironing at 10pm at night!! BUT THAT SHOULDN’T BE LIKE THAT FOR HIM. So for me someone coming in twice a week would improve our lives unbelievably.
2. Massage- yes we all love to go for a girly spa day etc, but this is seen as a treat RIGHT? Well for me alternative therapies can ease the amount of muscular pain I can be in. A massage once a week would be great to ease my neck and lower leg pain- and to go on a regular basis could help me be a little more physical myself without so much muscle pain.
I could think of a few more but you would really think I was a selfish cow.
What stops me then? Well I totally consider these to be luxuries and with things as tight as they are financially, due to not being able to work, they cannot be justified in any sense!
So back to the question………….necessity or luxury?
What’s on your wish list?