chronic illness

How to stay in control of the housework with chronic illness

- TracyB 6 Comments

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 all of these accounts or slating one because I like another………..nope, I’m firmly in the camp that there is enough room online for everyone doing  their own thing in the way that suits them! So this is just a recommendation on how to stay in control of the housework with chronic illness that totally works for me ( and hopefully others too) 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………….to be fair 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 time and more about a cleaning method that allowed people to be housework free for the whole weekend ( I mean who wouldn’t want that anyway!) but was well thought out and covered the whole house on a weekly rotation while keeping to a minimal amount of time………. 30 minutes a day in this case. The more I read the more I knew this method would work for me as I like that sort of routine to follow.

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The inevitable Christmas overwhelm

- TracyB Leave a comment

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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Chronic illness/ Chronic pain code for what we say and what we actually mean!

- TracyB Leave a comment

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 hands- when joints can dislocate!). I have had chronic illness and pain since 2009 and 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 cannot remember certainly in the last 7 yrs or so of a time when I have been pain free. 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! The most frustrating thing about my condition is that it is completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin………….NOTHING. BUT MY BODY IS WRACKED WITH PAIN DAILY. It also varies day by day which doesn’t help at all. It is generally ( in my case) 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 thought I would share a code for what we say and what we actually mean to help you gauge how we feel on a particular day.

Now it may be hard to believe – how can someone be in pain all of the time even with very strong medications? A normal person’s brain is not equipped to understand chronic, consistent pain at all. Yes they can totally empathise if someone breaks their arm, or has the flu or even something like appendicitis because naturally our brains can understand what’s seen as danger or acute pain –  pain that will be there until that body part has healed itself…………short term pain. They can imagine from past experiences how painful those things could be, but the normal brain is not equipped to understand a pain that does not go away! It’s just how we are made- and therein lies the problem.

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Welcome to my new little corner of the web

- TracyB Leave a comment

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

- TracyB 1 Comment

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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The ALS Ice Bucket Challenge Rant….. For or against?

- TracyB 2 Comments

I will warn you now that this post will deteriorate into a rant and I cannot be held responsible for my language that may follow…………..

I have watched loads of these videos and laughed at the person being iced without ever having any intention of doing it myself. Then I watched a video that changed all that. This video is heartfelt and shows the reality and the fear that someone who cares for someone with this disease or has it themselves.

WATCH IT HERE

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The Spoon Theory

- TracyB Leave a comment

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