Category Archives: M.E

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.

 

N:rem sleep system review

As most regulars will know I have had M.E for the last 6 years or so and what comes with that ( amongst a long list of symptoms) is constant chronic muscular pain which is not helpful when trying to get a good night’s sleep ( something that eludes me most nights).

I was recently given the chance to review a ‘sleep system’ that gives you the option of choosing one personal to your own needs. For me most of my pain is in my neck, shoulders, back and then my lower legs and ankles, with my ankles being the worst and therefore I use a walking stick to help with balance issues and to help me be up and around for longer periods than I would normally be able to manage. With my neck it just seems impossible for me to relax my muscles and regularly use heat pads ( along with very strong pain medications) to help ease it a little.

So, when I got the sleep system delivered I read through the information that was sent with it to help you put the sponge pieces in the right place for you. I was told that this could take a couple of adjustments but i was really lucky to choose the right placement for me from the first night.

The system in made up of 5 sponge tablets of different support levels from ‘super soft’ through to ‘firm’ The information gives you an idea of where to place them in relation to where you need the most or least support.

My placement from top (head level) to bottom (feet level) went as follows:

super soft

Soft

super soft

medium

soft

these are the tablets for a single bed

these are the tablets for a single bed

They come in an easy to remember colour code so if you do have to change them up a bit it could be done quite easily, but for me this worked very well.

I am normally quite sceptical about these sorts of things, especially when they try and promise a great night’s sleep however, this one did surprise me a little. From the first evening I felt very comfortable on this and felt the top half really took a lot of normal pressure off my neck, shoulders, and even my hips as I usually lay on my sides most of the night. So in all honesty I really slept quite well ( for me anyway) on that first night. The next day I had a day where I needed to go back to bed in the afternoon ( something I have to do on a regular basis) for a few hours. I realised when I woke up that I was actually in the same position I had originally settled in, and I can tell you this NEVER happens!!

I did get used to the system very quickly and I can say that for a few days that week I seemed to manage a little better, yes the pain was always there as usual but as I was getting more quality sleep than I am normally used to, even if it was just an hour or two it did make me feel like I was able to do slightly more than I normally can.

Begrudgingly I had to give the system back after a week and funnily my husband has remarked that I have started to toss and turn again like I used too, so it certainly was doing something for me!

But for those of you who may suffer with disturbed sleep, or chronic pain that then affects your sleep this could proof suitable for your needs too. Having checked out their website they also offer a monthly payment for the system so you can spread the cost and equals to £1 a night- not bad for a decent night’s kip.

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**DISCLAIMER: I was given the use of this system free of charge for a short time for the purposes of a review, however all views are my own.

 

I’m a social outcast!

This has been playing on my mind for some time but really only hit home yesterday when I received an impromptu invite to go ‘up north’ on an overnight road trip with a friend.

I have had M.E now for around 6 years (diagnosed) and slowly but surely it has taken control of my life. I am not able to be as mobile as before, or on the go as much, and I do spend a lot of time in my pj’s not because I’m lazy but because there are days where I will end up back in bed or I just haven’t the energy at all to get in the bath or shower. I do use a walking stick now when I go out as it gives me stability when walking due to the knife stabbing pain I have in my ankle joints 24 hours a day, and my calf muscle feels like it will rip with every step I take. Therefore, the stick is a helpful reassurance for me that I will not lose my balance or fall over which would just be the most embarassing thing for me! On longer days out I will choose to use a wheelchair due to the walking involved ( if we go to a theme park, or when we are on holiday as it saves me spending the next day in bed due to any walking I may do). I HATE having to use both and fought against them for a very long time before I realised that they were actually a benefit to me.  When I have got something to get out for I will adjust my days and rest up beforehand and plan nothing for the day after so I can stay in bed if it’s necessary.

Over time I have seen so called friends fall by the wayside, and invites to nights out or weekends away or days up in London etc become non existent. These so called friends have taken it upon themselves to decide for me that I would not be able to go on these outings. Let’s face it who wants to be stuck with someone with a stick when they have gone out boogying for the night! I have become ‘a hindrance’, a problem, even a disadvantage for them.

What they have failed to consider is on a night out I would never expect someone to have the ‘issue’ of keeping me company at the table while everyone else is on the dance floor. I would actually be very happy to keep an eye on the drinks and handbags with the bonus of having a few minutes here and there boogying on the dance floor ( without my stick) over the evening out. I would still enjoy the night, get drunk as normal, and have fun with friends who are also out having fun. Yes I would be frustrated that I couldn’t be on the dance floor all night but those are my frustrations to deal with, not theirs.

Last night I had an invite from a friend who I do not see very often but am in contact via text and Whatsapp virtually everyday amongst a group of girls who are fundamentally mad as hatters but just brilliant, fun company. I was not left out of her 40th birthday celebrations a few years ago when we all met up in London for a great and fast river boat adventure on the Thames before a bit of a pub crawl and dinner as well. There was a fair bit of walking involved and I popped my pain medications all day long, had a brilliant time and then spend the next day or two in bed, but it was bloody worth it. This friend is organising a road trip up to help support another friend as she opens her own interior designs showroom. She is doing the driving and and she also offered me her bed if we crash on someone’s floor. At no point did she leave me out of the group ( she didn’t have to include me and I would not have been none the wiser), it was just an instant shout out to see who would be around for an overnight jaunt. I am excited to have something organised, sad as that may sound, but even more happy that she did not discount me by making the decision that I would not be able to manage it.

So, my question is why is everyone else making the decision on my behalf to leave me out? I am a sociable person, I love a good laugh, I have no problem making a fool of myself, I love to have a drink with company and can get rat arsed the same as everyone else ( there is no law yet about being drunk in charge of a walking stick!).

It makes me wonder then what people see when they look at me. What do you see?

Thankfully they didn't put all 43 candles on it otherwise my face might have melted!!

 

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 trouble with………..

……….long term illness is that from one day to the next you never know what it is going to throw at you! The last month has been unbelievably hard, my M.E symptoms have been flaring up. The exhaustion I have had has left me in my pj’s most days until at least 3 or 4pm, the pain in my muscles has seen me put on my new medication (that isn’t working) and generally feeling crap about everything including myself! I have found it difficult to be on here at all and have had no enthusiasm for it, but that is getting back to normal.

………..Mother’s Day with teens is that the presents change as I found out this year. Although I got my usual ‘little’ things that I love, mugs/ good coffee and other bits, I also had a more unusual gift which looked initially like this

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are you getting the theme here? But tucked inside was this……….

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Tickets to a show in the Palace Theatre for Breast Cancer, with Paul Potts, Shane Ward, Joe McElderry and Kingsland Road to name a few. It was a cracking night too.

………….the school holidays with teens is that they actually want to spend most of it in bed or in their rooms. Now the late mornings I am not complaining about but the wasting of days I am! Gone are the days where I would have everyday planned out with them, activities, visiting, meeting with friends at the park etc. But now they are teens, especially my eldest, he had some of his own things going on. He went out with friends to the cinema and bowling etc so a lot of the days were already planned. I do miss the old days but actually found this school holiday far more relaxing than previous ones. We did have the odd day out, Whitstable and Herne Bay -that sort of thing.

Me and my lovely boys!

Me and my lovely boys!

We also had some great card game nights after my MIL taught my youngest a few new games when he stayed over for the night at their caravan.

So there has been lots going on but I haven’t been that bothered about sharing it all until now. I will get back into the flow of things and have missed reading all my regular blogs and my conversations on Twitter but I have to admit the break has done me some good. So will be churning a few more posts in the next few days about what has been going on around here like my eldest turning 16!!!! Now that’s another post