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

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.

Now that 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.

Therefore, as you can imagine this can be the cause of all misunderstanding around consistent pain. People think it’s actually not possible to be in pain for that long or believe that it never goes away. They see us ‘spoonies’ up out of bed and dressed and dare I even say it, possibly even with make up on and possibly even smiling and chatting!!! I mean c’mon if you are in pain would you even be doing that?………………..ERM…………..actually yes sometimes you would! Not because the pain is reduced that day or any less severe, but more so if you didn’t make the effort ( and believe me you have no idea how much fecking effort that actually takes when you feel like death!) you would never leave the house or see anyone!

Then once you have a chronic condition like that when anyone asks how you are- they aren’t fully listening or really wanting to know simply because most of the time they don’t understand it, think you are exaggerating or even lying about the severity of the condition. As time goes, on I can tell you, that you definitely find out who your true friends actually are. Having to cancel going on a night out does not go down well once you’ve done it more than once. The invitations to go out or do anything start drying up because if the venue is somewhere where there’s dancing to be done no one wants to be the one stuck at a table keeping you company! If its a day out with a fair bit of walking your invitation gets ‘lost’ as no one wants to be lagging behind walking at your speed rather than be with the crowd. Believe me it happens………………………………I’VE BEEN THERE AND GOT THE T-SHIRT ON THAT ONE!

You learn very quickly that when people ask how you are they are generally being polite and I can tell you most spoonies will answer ‘I’m fine’ (which generally means I feel like death but with a pulse!) and the conversation will quickly move on to what they’ve been up to.

So, I thought I would do a quick reference to what we say and it’s translation to what we actually mean- you know just for the laughs!

I’m Fine!

Like I said above this is the general term for I feel like death but with a pulse- but I have made the effort to get up and dressed to either meet up or go somewhere.

I’m a bit tired!

I literally cannot hold my own body weight up, it feels twice it’s normal weight but I also feel as though I’m wearing a pair of lead boots walking through a swimming pool of treacle whilst someone is pressing down on my shoulders with their own full body weight!

I’m a bit sore!

Feck me I think I’ve just done 10 rounds with Mike Tyson then been thrown out of the ring to be run over by 2 double decker buses and then been set upon by a pack of feral wolves…………..DON’T FECKING EVEN TRY TO TOUCH ME (OR EVEN LOOK IN MY DIRECTION)!

I had a rough day!

ALL OF THE ABOVE…………but now I feel sick, have a migraine and cannot even swallow food or fecking blink……………so I’m unable to get out of bed, the blinds are closed, earplugs are in as noise sensitivity is through the roof. Just check me occasionally to make sure I’m still actually breathing!

So if you have a friend or a family member who has a chronic illness and suffers with chronic pain, then PLEASE recognise the above standard phrases and REMEMBER what they actually mean. It could make all the difference to our day. If you look closely enough you will probably notice that  our smile we plaster on our face is not reaching our eyes…………..look closely next time.

HOW ARE YOU TODAY?

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 at last

Any of you that have been following me for a while will know that I have ME and Fibromyalgia, which in lay mans terms means I am permanently exhausted and have constant chronic pain (with 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 even though there was nothing similar in my area. 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.

I came out feeling amazingly positive after speaking to three separate specialists who not only believed I was in pain but understood how it affects my daily life and had input in how they could, together as a team, help me manage my pain better and help me restore some normality back to my life.

THIS IS HUGE!! For years I have been left to cope with only inadequate pain relief ( turns out opiates are useless in treating the pain I have-typical!) with people finding it hard to actually believe I am in CONSTANT pain. I know I am my own worst enemy as I do not allow anyone to see how it affects me. If I go out no-one would even think for a moment that my body is screaming out in pain, I will smile and chat and completely mask it ( hence some people think it’s not possible to be in pain ALL of the time). My only visible show that something is wrong is that I use a walking stick, not because I bloody enjoy people looking staring at me but because the pain in my ankles is sharp and knife like and can literally knock you off balance when out walking around.

This denial, or masking my issues seems to be part of the problem. If people think I am OK I will carry on as normal doing things I know will knock me off my feet the next day just so no- one sees I cannot cope! Apparently I need to learn to say ‘No’ and totally understand how to pace activity. This is new to me too as I totally live my life the ‘boom and bust’ way, that means on days where I am more able I will do WAY too much just to catch up etc which then pays me back with several days not able to do anything at all.

So, after an extremely long hospital visit to the clinic yesterday they offered to put me on a 7 week pain management course which looks at all these issues alongside getting a combination of medications that actually work with a routine of pacing.

This is the most help I have had in all the years I have been diagnosed. I feel positive with everything they were telling me and I now have to just wait to hear when the course will be starting. Although it is 7 weeks long it is only 1 day a week at reasonable times with lots of breaks etc. I will meet other people in the same position who actually live in my area too which could end up being a bonus socially.

I have been on support groups online throughout having the illness but I tend to find they become quite depressive with people venting every little aspect, pain, new symptom and bad day they are having. I too have those days where it can bring you right down in mood, but that is not how I want to live my life- it is restricted enough without wallowing in what’s wrong instead of concentrating on what is going well. So, although I remain on these groups I tend only to comment on positive posts because I do feel that sometimes when I am feeling OK they can have a draining affect on your mood as you start to think ‘Oh God is that how I am going to become’. I am not running these groups down they do provide people with daily contact and reassurance and generally are a good thing, however, it can become a bit of a pity party some days and that’s not how I want to look at my illness. I know some people will say they have been on the course I have been offered and it did nothing for them and that’s fine, but because a lot of how you manage pain can be down to mindset as well I do not want to go in with any negative attitude- otherwise what is the point?

So, I will keep you updated when I do start and let you all know what happens. But for now I am very happy I am getting any help at all and we have to be prepared to help ourselves as well as the illness is complex and cannot just be fixed with a particular medication or procedure. So send loads of positive thoughts please, I am feeling that my outlook is going to be rosy.

 

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