Chronic illness code for ‘I’m fine’

chronic illness code for 'I'm Fine'

One of the biggest downfalls of having chronic illness is that no one is really interested in how you actually are. The phrase ‘I’m fine’ is incredibly overused. So, I wanted to share the chronic illness code for ‘I’m fine’ and a few others that we would say, but actually tell you what that means.

Most of you will know by now I have ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), Fibromyalgia                            ( widespread musculoskeletal pain) and more recently Joint Hypermobility in my hands and ankles. This is when when joints can dislocate and hyper extend easily.

I’ve had chronic illness and pain since 2009. Even with high levels of pain medications, including morphine, I still experience pain 24hrs a day, 7 days a week and 52 weeks of the year. In truth, I can’t remember of a time when I have been pain free in the last 8 years at least.. I read recently that the full list of symptoms of an ME or Fibro patient is the same as a patient with AIDS around 2 months before death. Just let that sink in.

The most frustrating thing about my condition is that it’s completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin. Yet my body is wracked with pain daily. It also varies day by day which doesn’t help at all. In my case it’s generally at it’s worst in the winter.

I’ve also written about ways I can use heat to help with pain levels and trying to stay warm here as it’s just not possible to have your heating on 24hrs a day!

So, I wanted to share the chronic illness code for ‘I’m fine’ and some others but actually explain what we mean, to help you gauge how we feel on a particular day.

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Staying in control of the housework with chronic illness

Staying in control of the housework with chronic illness

Staying in control of the housework with chronic illness

 

There is no denying the cleaning frenzy that has spread like wild fire online over the last few months. So I would like to say from the start this is NOT another jumping on the bandwagon post, but more of a recommendation of what I found has worked for me. First of all I would like to make it clear that I’m not judging any of these accounts or slating one because I like another. I’m firmly in the camp that there is enough room online for everyone doing  their own thing in the way that suits them. This is just a recommendation on how to stay in control of the housework with chronic illness that totally works for me in regards to my illness and pain levels.

I make no secret of the fact I have chronic illness which sees me deal with chronic, persistent pain daily. In fact I cannot remember the last day I was pain free. Not to be flippant but if I woke up pain free I would probably think I had died.

Anyway, before this HUGE cleaning frenzy craze took hold of everyone I literally stumbled upon an Instagram account that was less about just cleaning random things at any one time and more about a cleaning method that spanned over the week.  It’s been well thought out and covered the whole house on a weekly rotation while keeping to a minimal amount of time. Just 30 minutes a day in this case. The more I read the more I knew this method would work for me.

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The inevitable Christmas overwhelm

As I sit here writing this I am still  feeling the affects of drinking way too many cocktails at a Christmas party last night, and I am watching White Christmas for the very first time!

 

It’s the ultimate Christmas cliche isn’t it? Christmas parties, festive hangovers and idyllic lazy afternoons watching Christmas films and feeling like its just ‘the most wonderful time of the year’. However, what you don’t see is the inevitable Christmas overwhelm that I have now come to expect every year. My husband loves Christmas and says it’s his favourite time (and day) of the year………………..well I mean you would wouldn’t  you if you if it literally landed on your lap with virtually no effort whatsoever! That’s how it is most years, I sort ALL the presents (even for all his side of the family), I sort everything we get for our boys, I organise all of the food and treats………Oh and then I obviously cook dinner most years ( although thankfully I am not this year as we are at the in laws on the day). That generally leads to an annual Christmas meltdown for me at some point, normally fairly close to the big day, when I realise I haven’t got everything I need, haven’t wrapped anything and realise I haven’t got something we need for the actual dinner. Anyway you get the general picture.

Yet on good ‘ol social media everyone is literally Christmassing the shit out of life, putting their decs up as early as possible, having all their pressies wrapped by December 1st and their food order slot booked, and so can sit smugly back and take time for themselves to get their Christmas nails done, order their party dresses enjoy the wonderful festive season in all it’s glory.

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Welcome to my new little corner of the web

Welcome to my new little corner of the web.

Those of you that know me from Mum in Meltdown will know I haven’t written on there for a long time as I simply fell out of love with that site. Each time I went on there it became apparent I had out grown  the Mum in Meltdown label. My boys are no longer younger teens (which was my main focus on that blog) and no longer happy to be talked about………..which is absolutely right and understandable.

So I deliberated for a long time not quite knowing whether to continue blogging………..I mean what the hell was I going to write about. I blogged the teenage years because it’s an absolute brutal minefield that will send you right over the edge on countless occasions. Yet, at the same time I was engaging with people in the same boat, going through the same struggles and therefore, it made me feel……………..well, almost normal.

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Fibromyalgia pain management help on the horizon

Fibromyalgia pain management help on the horizon

 

Any of you that have been following me for a while will know that I have ME and Fibromyalgia, which in layman’s terms means I am permanently exhausted and have constant chronic pain. There are lots of other symptoms but the list is too long to mention.

I was diagnosed in 2009 and after being initially referred for a 12 week management program in London at the start my Borough decided they would not pay for me to go out of borough for treatment.  So, after being diagnosed  I was then left with no input apart from pain relief from my GP.

I spent years on Tramadol until my body totally adjusted and they were having absolutely no effect. Last year when the pain became to difficult to handle my GP switched me to Morphine (slow release) and Oramorph for breakthrough pain during the day. Again as my body adjusted they had less and less effect and the dosages where increased to a point where my GP could not authorise another increase without referring my to a Rheumatologist.

This was probably the best thing that could have happened. I had an appointment in February and she confirmed 18 tender points of Fibro around my body alongside all over body tenderness. That means my body feels bruised so wearing clothing/ shoes etc all hurts as though someone is pressing directly on a bruised piece of skin. From there she referred me to the Fibromyalgia clinic and I had that very long appointment yesterday. It takes all afternoon as you see three separate specialists in different areas who all work together to approach the illness from different angles.

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Energetix Magnetic Jewellery Review- M.E Related

THIS IS NOT A SPONSORED OR PAID POST

I like to pride myself on being good with money. I can make a small amount go quite far when it ids required. I can prioritise what is desperate and what I can leave for just that little bit longer. This includes making the food bill stretch, when necessary and paying all the necessary extras, such as the kids after school clubs and finding alternative ways to entertain the boys without spending a fortune!Anyway speaking to her for a little longer I was able to obtain a bracelet to try for review purposes. I was told I could wear it all the time except in the shower. As you can imagine after 4 years of constant muscular pain I would try anything……………..and I MEAN anything ( even if it meant running up my street nude………………ok that’s pushing it a little). She advised that I should try it for around 21 days and then see if I had noticed a difference.

So on went the bracelet and I waited. However, after 24hrs of wearing the bracelet I got the most horrendous migraine- NOT A GOOD START! So off came the bracelet and a day later I tried again……………and on came the migraine!! So for the second time I took the bracelet off and so far was NOT impressed. But I’m a trier if nothing else ( my OH says I’m very trying) so on went the bracelet for the 3rd time.

This time NO migraine!! Nothing at all, not a snifter of any pain in the head. A good sign I thought. Since then I have worn the bracelet ALL the time except when in the shower. So, over a month down the line have I noticed any difference?

Well to be brutally honest………….YES I think I have!!

This has sort of shocked me a little. I have had days where I haven’t needed to take my full quota of 8 Tramadol and Paracetamol cocktail. This is a good thing for me as I would love to come off all the pills altogether, so taking less, even on a few days, is a huge bonus!! Now with all alternative remedies not everyone will have the same results as what works for one does not always work for everyone.

 

This is the one she gave me to try – however the jewellery comes in all shapes and sizes!

She also had some helpful literature with her:

So how does it work I hear you cry? ( C’mon play the game people)

This is what the literature says:

How do magnets work?

Powerful Neodymium magnets worn near a pulse point stimulate the blood cells, therefore passing oxygen and nutrients around the body more efficiently in turn, releasing a natural anti-inflammatory, Cortisol, resulting in the alleviation of symptoms of many common ailments.

As a result, toxins are removed therefore reducing the chemical imbalance which is often the cause of discomfort

Like I said at the beginning this was not a commissioned post, it’s just a product that I came across and was able to have a try. For me I hope the bracelet continues to do what it is doing for me and only time will tell. But for a person who suffers relentless muscle pain any reduction of pain/ sickness/ medication can only be a good thing!

This is the link through to the lovely lady Nikki that I dealt with www.nikkip.energetix.tv

The Spoon Theory

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!

Cartoon image of Christine Miserandino holding a spoon