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
The Spoon Theory- but you don’t look sick!
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.
M.E/CFS A Torturous Disease
What is M.E/CFS
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.
So, if any of you find my mojo lurking in your cupboard, or a bin, or even on a street corner, can you please direct it straight to me…………….
MANY THANKS
I have had M.E for 3 years now. I was diagnosed early which was fantastic however my NHS borough decided that they would not pay for me to have the available CBT and Pacing treatment available at Kings College Hospital in London.
It truly is an invisible illness. We can look fine to people on the outside however, on the inside our bodies are screaming out with severe muscular pain and overwhelming exhaustion.
I cannot begin to describe how I feel that would make a normal person understand. But if you think of the worst case of flu whilst running a marathon in a swimming pool, you may start to have an understanding how I feel everyday- AND THAT WOULD BE A GOOD DAY!! On a bad day I would not be able to get out of bed.
SO PLEASE TAKE THE TIME TO WATCH THE VIDEO LINK I HAVE INCLUDED BELOW.
It will only take a few minutes of your time but could make all the difference in your understanding if you know someone who suffers.
M.E AWARENESS VIDEO
PLEASE: WE ARE NOT LAZY OR PRETENDING – THIS IS OUR LIVES- WOULD YOU WANT TO LIVE IT!!
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? Would they be necessities or luxuries?
I don’t mean family or good health etc which is important to all of us. I mean the selfish stuff, you know, more money, a size 8 model figure, ‘good hair’ days everyday and the like.
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 and jogging 2-3 times a week. Having some spare money to spend for the family and being active with the kids. To being unable to work and have loss of earnings. being 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.
Therefore, the things that would make a huge difference to me would be things that I would class as luxuries. Yet I feel they are like necessities to help our situation. Therefore, as a priority are they necessities or luxuries?
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 Mr B (who is an absolute star) does a lot 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. Yet 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.
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. 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. So with things as tight as they are financially, due to not being able to work, I just cannot justify these in any shape or form.
So back to the question………….necessity or luxury?
What’s on your wish list?
Well almost anyway. After the last few weeks of activity my body definitely isn’t used to and crushing recuperation in between has seen me absent from my blog for a while.
I’m getting back to some level of normality, but only just!
It started with :
This was a gruelling ( for me anyway!) four 12hr days with travelling on top. I really cannot explain how I managed to stay standing ( my lovely new walking stick came in very handy). I don’t think I have pushed my poor M.E body that hard for a very long time. When it was over I went to bed and lost almost 2 days in bed and the rest of the week sleeping while the boys were at school. However, he had 2 more auditions in London the next week and a day on location on Norfolk to finish the film!!
That meant another day spent in bed afterwards for me and very quickly my days were disappearing. I haven’t blogged or been on Twitter, I haven’t knitted for what seems like ages ( although I managed to do some whilst chaperoning my son. Even watching mindless TV would take it’s toll.
However, other things have been happening all be it around me:
Like this great chocolate swiss roll that my eldest decided to make at the weekend!! It tasted just as good as it looks too, although I might have had to have several slices just to make sure.
We also found this, a copy of the paper my eldest was put in for his efforts to raise money for the London’s Air Ambulance. That’s him in the middle of the picture with the crew who got a call literally seconds afterwards and we got to watch them head off on an emergency call- fantastic!
Oh and of course the recent sunshine (most of which I have missed by being in bed) brought out the ‘Diva’ side of the cat…………………life is good, feed me more treats!!
However, the down side is I am sooo behind with everything, cleaning, ironing, cooking even to some extent. That’s without mentioning the blog. I have emails I haven’t responded to, posts that I need to write and networking to do.
So be warned, I have some great posts coming- an A-Z of me, a review that might interest those of you who value a restful nights sleep, a few of my knitting projects that I haven’t taken pics of yet!
I’M BACK…………
I hereby welcome my newest family addition. This has been a long time coming as I had put it off for such a long time! Now however, the time is right. But I want to tell you it truly is a love/ hate relationship. Can we love something and hate it at the same time?? Well I think I do. I love what it enables me to do but hate it as it draws people that I do not know to stare look and therefore makes me uncomfortable.
So here’s my new addition……………………………what do you think?
My ankle pain has been so bad since before Christmas that I have ‘given in’ and bought a walking stick to help. I have to travel to London regularly with my youngest and his acting activities that it has become a necessity!! I refuse to use it all the time however, if I know I am going to be out for an extended period I will take it with me.
So I love it because it truly helps me when I am out walking but hate it at the same time as I see people look at the stick and look at me!!! What is it?? Never seen someone with a f**king walking stick before?? It does not mean I am mentally retarded or ‘care in the community’……………………………….it just means I need help to be on my feet for longer!!!
I feel as though I need a sign around my neck saying ‘I am normal you know- no need to treat me any differently’.
My health borough refuses to pay for any M.E treatment so I don’t have access to therapy groups, or OT’s or programmes to help me manage the condition better. I have to use what works for me- and this helps for those days I know I will be having to walk longer distances. I am always in pain especially in my ankles however I refuse to confine myself to bed or stay indoors and so this is seen as a solution to problem that I have to face.
Do you know of anyone who needs walking aids or help to get around who is frustrated with how they are viewed?
I struggle with my energy levels on a daily basis. Even if I wake up and feel OK ( doesn’t happen that often!) my energy can be zapped by just getting in the shower and dressed. That can be enough to stop me doing anything else for the rest of the day ( I’m so not kidding).
I live in a terraced house and we had a loft conversion done a few years ago now before I had the illness. So my bedroom is 2 floors up!!! This can be horrendous on some days, as you can imagine. Walking up a set of stairs will be like doing the London marathon for me. This is generally Ok when there is someone else in the house as they can go upstairs for anything I need. However, I spend most of my time on my own, my boys are at school during the day and my hubby works shifts!! So along the way I have altered my way of doing things to make my life a little easier.
Top 5 tips on saving your OWN energy:
1. I suffer with the cold so I have hot water bottles downstairs and upstairs. So if I need instant heat and I’m upstairs I just fill it from the tap (as hot as it will get). This saves me going downstairs to boil the kettle and then having to go back up a flight of stairs!
2. When I get dressed for the day and I’m ready to go downstairs I always take the boots or shoes I’m going to need to go anywhere down with me. So although I always wear my lovely thick and fluffy slipper boots inside, once downstairs I then have my boots/ shoes I need for the day ie: for the school run etc.This may seem very trivial to some but all my shoes are kept in my wardrobe (2 flights up!!) therefore I need to make it a routine to always lift them out and bring them down. If at last minute I have to go up 2 flights of stairs in one go…….I might as well kiss goodbye to the rest of my day!!
3. Most days without fail I go back to bed after taking my son to school. By then I would have been up for 3 hours or so and my body is generally screaming out to rest!! (sad I know- I sound like a really old lady). However, when I do wake up like most people I need my coffee to get me kick started. If I’m up in bed that would mean coming down 2 flights of stairs and then back up to get ready………I NEVER DO THAT!! Instead I make myself a coffee that I take up in a flask!! GENIUS I know lol, but it truly is a life saver when I wake up!!
4. One device I have recently purchased which has been fab has been my Electric Can Opener!! So how does this save energy? Well you obviously haven’t seen me try to open a can……………..IMPOSSIBLE. I have no muscular strength in my wrists and hands due to my M.E, and I have complete numbness in my left hand and arm most days ( gripping anything is a joke!!). So this little device does all the hard exhausting work for me, and it saves my hands from ceasing up the next day. I LOVE IT!!
5. Ok this one is a true confession!! I have one of those very attractive * cough* old lady trolleys! There I’ve said it and it feels like a huge weight off my shoulder. If I’m on my own and need to get anything this is a life saver. On a good day I can pop to the high street pick up what I need, shove it all in the trolley and Bob’s your uncle. This was a necessity as I was always having to have someone with me when I went anywhere in order to carry my bags ( I sound like the Queen now). However, I’m not out and proud!! I still lower my head when I go out with my trolley- inevitably I always meet someone I know too! But this gives me an independence on a good day to be productive. Hail the old lady trolley…….YAY.
So there you have it………….my very own energy saving tips to get me through the day.
Can you think of any others that may help or that you have used and want to share?
I have decided to share my experiences of M.E with you in the hope of raising awareness for what seems an ‘invisible’ illness. Click here for more information.
As anyone with M.E will know we can still feel cold in the summer, let alone deal with winter temperatures.
I have put together some of my own tips that I use in order to keep warm without breaking the bank by having the heating on all the time!!
Top Tips:
1. Wheat heat pads are a great investment. They are relatively inexpensive to buy (but you can aways check in your local charity shops too). I have several of these and they only need heating in the microwave for around 1m 30 secs and you have instant heat!! They are also good for muscular aches and I use them to ease the pain in my ankles and neck but also as ‘instant heat’!!
2. The good old hot water bottle, it never fails. You don’t need to buy fancy or expensive either. At this time of year they can be found in abundance in the pound stores. I also have a mini one that is great to take with me on the school run as I can warm myself in the car before getting out into the cold to collect my son. Also, a cover is great and helps to keep the bottle warmer for longer…………..but don’t buy unnecessarily- use and old jumper that the kids have outgrown to cover it or make one if your ‘crafty’ enough.
3. Thermals- underclothes and socks. They are truly a worthwhile investment. Again these don’t have to cost much, I have seen leggings and long sleeve tops available in Primark- but sports shops are great for this too. Thermal or ‘heat’ socks I have in abundance and again can be found just in sports shops.
4. Thermal insoles for shoes/ boots. These I cannot do without and you need to invest in a decent set that will last. I have one set at the moment and I transfer them to whatever boots I am going to wear for that day……………….they truly make a difference.
5. Wrist Warmers! I have recently knitted myself a basic pair of these just for wearing indoors. My hands are always cold ( even in the summer) and when I am working on the computer they get absolutely frozen. Knitted wrist warmers either made or shop bought are a great way to keep hands and wrists warm whilst still being able to type, read a book, knit or whatever else you do!!
Hope some of these tips help. I have lots more to share and would love you to pass on to anyone you know who suffers with M.E/ Chronic Fatigue Syndrome or similar.
It would be great to have an online ‘help’ community that could share what works for them and therefore may help others.
Well, relatively speaking anyway.
My son has now finished his run in panto this season and my body is very, very thankful it is all over.
The last few days have been spent looking through all the presents again. Taking time to read through books and listen to CD’s and actually play with some of the games that the boys got.
The decorations have come down and have been put away until next Christmas, and the house has resumed it’s normal look and feel. It has been the boy’s last day off today before they return to school and Mr B returns to work. So tomorrow will be blissfully quiet for me.
I managed to enjoy a fabulously chilled Christmas day with the family and my Mum and brother who had come to stay.
That was until my cat made a quick escape past us and caught my mum on the face millimetres away from her eye. These events are not unusual in my house as a few years ago she came and fractured her pelvis trying to play tennis with the boys. Last year we were all ill with ‘Swine Flu’….. I’m sure you are getting the picture now.
Anyway, the last panto show was on New Years Eve. After, we headed off to Bluewater for a nice meal and a cinema visit before returning home to see in the new year and let off our lanterns with 2012 wishes on.
I haven’t caught up on all my blog reading and Twitter following yet so haven’t seen all of your New Years resolutions. I’ve decided to learn new skills this year and get back to my knitting, something I really enjoyed doing many years ago. But also to learn how to crochet as it’s something I have never attempted.
I cannot go down the route of exercise and diet as my body is taking a long time to recover from the panto schedule. Conventional exercise for me is out of the question at the moment as I suffer with chronic pain and chronic illness.
I’d also like to do more reading as this is something I have neglected for some time. I’ve been given a copy of ‘We need to talk about Kevin’ as one of my Christmas gifts and I’m really looking forward to starting that.
So, that’s me back to normality, with a regular routine about to start from tomorrow.
A New Year.
A New Start.
A New Skill.
How has your New year been so far and what are your resolutions?