Tag Archives: chronic illness

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

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

I have also been chatting to ‘friends’ on Whatsapp who over the last few days have shunned and slated people who are nominating them to take part. I warned them I had been nominated and would be doing it anyway ( I don’t bow under peer pressure!). However, in the conversation one lady put out a HUGE long list ( obviously copied from the net somewhere) giving other things I could do to ‘walk a mile in ALS shoes’………

* put weights on my ankles and take the stairs 2 at a time to feel what they feel going upstairs

* put weights on my wrists and try and lift a cuppa or feed myself

* lay in bed for an hour in one position without moving

* put marshmallows in my mouth and try and have a normal conversation and make myself understood

This got me riled to say the least so I ‘POLITELY’ put back….

‘ I may already qualify for those as I have M.E / Fibromyalgia meaning severe and chronic muscular skeletal pain ALL the time and have NOT been pain free for the last 4 yrs at least- NEVER in that time, EVER, even in bed. I use a walking stick daily due to severe exhaustion and ankle pain and a wheelchair for anything longer that a short walkabout. I have nausea and migraines regularly and I feel as though I carry a full extra persons weight on my back and bones and muscles all the time and my bedroom is up 2 flights of stairs- hope that helps! ‘

RUDE? No I didn’t think so but guess what…… I haven’t heard a peep back from that particular person! When I relayed this to my family and gave them the alternatives that she offered my youngest ( whose is 13yrs old) just said ‘ That sounds like you Mum’.

So I did my challenge knowing that iced water was definitely going to give me severe problems later in the day, however, my reasoning was that MND is degenerative to the point of taking your life, my illness is long term and chronic also but wont take my life unless I choose to make it so.

My #IceBucketChallenge for ALS/ MND

I know there was a bit too much vengeance in the throwing of that water. But what  I hope you notice is that I was rendered speechless, and the cold literally stopped me from doing anything apart from shake, which is the whole idea of the challenge. Just after that my OH had to help me up and by the time I had walked to my back door to go inside I had a searing pain in my left temple and a complete wave of nausea!

I was quite proud of myself though for doing it and my 2 boys have completed theirs today and my OH is doing his tomorrow ( revenge will be sweet!) and we are donating as a family with everyone contributing.

I felt good about myself that I had done something ‘good’ for charity, a great cause that most people know very little about and really is a horrible degenerative disease.

BUT……

Then tonight I saw a random comment on Twitter ( and I know and understand that everyone has their own opinion and I do respect that- hence I didn’t get into a Twitter row) that simply said ‘I am so over this #icebucketchallenge bollocks’. This one comment sent me completely off my fecking rocker. Bollocks? Bollocks? Really?

Ok I know this challenge is a bit like Marmite and you either are for it or against, but really raising awareness for a degenerative disease- Bollocks- I think NOT!

I would LOVE to know if that person has taken the time to visit the MND or ALS site. I would like to know if they have a person in their family who suffers with a chronic illness that is NEVER going to go away let alone take their life. I wonder if they would be of the same opinion if someone in their family or they themselves were diagnosed with ALS.

Answer me that………. would they be so fecking cold hearted if they had. This is what it is all about, raising awareness and funds to help with research into this disease and to help people who have to suffer this. I mean come on you wouldn’t see your family pet in that sort of distress let alone a member of your family.

So you can shove your ‘Bollocks attitude’ where the sun doesn’t shine, empathy and compassion costs nothing and it really wouldn’t hurt you to show some occasionally!

RANT OVER

To Donate just text ICED55 to 70070 to donate £5 to MND Association- it will take seconds for you to do this but could make all the difference to future sufferers.

 

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