MY 3rd appointment with The Specialis CFS/ME Hospital Team

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MY 3rd appointment with The Specialis CFS/ME Hospital Team

Postby Jeany » Wed Jun 11, 2014 8:34 am

This is very long, so my apologies.

Yesterday I had my 3rd appointment with my 2 lovely case workers, who explained that this is where the journey and work towards helping me towards some sort of recovery begins. This is a 1 year program, which slowly re educates people with these conditions on how to manage their low energy, and not to run your energy too low, because then it takes up a huge amount of precious energy to recharge our batteries.

The secret seems to be to get a balance in life, and the activities we do, and to STOP before we are even close to over doing it. People with ME/CFS and Fibromyalgia cannot expect a good nights sleep to refresh us and restore our energy levels like other people do after a hard days work. With us if we over do things we pay the price, and it can mean a step or ten back from recovery or a complete crash.

The journey to recovery will be slow and with little steps, and will include all sorts of advice along the way, which will include diet and looking after your body, BUT also realising that you have to look after your mind/emotional well being also, and that the mind and body work together. If you neglect your emotional well being then your body will show this in some very strange and not very nice ways.

My case workers explained that we are all affected differently by these illnesses, and while some can continue to work others are disabled by these conditions. I asked if I will ever recover and be well enough to return to work, but that is like asking “How long is a piece of string”. They do not know if I will recover or how much. We are all individuals, but I do know that I am very lucky to have this brilliant team at my disposal. The team includes dieticians. Psychiatrists, Physiotherapist, specialist nurses and doctors, and more, and they are all lovely caring, kind people. It is wonderful to just speak to people who understand.

My 1st appointment was to assess what symptoms I had, and see how my illnesses impacted on my life.
2nd appointment was like “ This is your Life”, and this I found very emotional while delving into things that had happened throughout my life, which I see now may have resulted in my present conditions.
3rd appointment (yesterday) Why do I always end up very emotional when I talk about myself I wonder .

Anyway I have been given some paperwork to read which explains there are different levels of activities (yes I did know this), and that to start with I must just do 15 mins only on any activity.

For instance I may have important paper work to deal with, which can be done for 15 mins in the morning( instead of for a full hour, which may cause a crash), and then I may have a cuppa before washing the dishes, and then maybe read a magazine for 15 mins, and eventually return to the paperwork at some point when I feel able to. I know this is not possible for people who work, but for some who are very ill it is essential to follow this course. For people who work some of the tips will also be useful. Doing this means that different parts of our body and mind are not being used for too long.

The idea is to VERY slowly increase the levels of activity, but 1st to find out what our body can tolerate now, and this means keeping an hourly 24 hour daily diary. I think you can print these out online.

Then when my case workers come back they can tweak my activities to try to minimise the pain & fatigue, and make suggestions as to how I can manage my energy. Even inactivity contributes to pain and fatigue, and this is why it is a good idea to vary the activities of both mind and body throughout each day, so that no part is over stretched.

Below explains how I will fill in the Colour Diary ( Just need a pack of crayons) , and that it is not essential to explain exactly what I was doing at the time, but I can if I wish. Also it may be helpful to add on a scale of 1-10 what levels of fatigue/pain I am experiences at the time, so I could just add the number in the box for that particular hour and then colour it in with whatever colour applies to what sort of activity I have done.
RED High energy activities Shopping. Walking. Excersise. Concentrating on paperwork. Heavy housework. Anything emotional. Arguments. Computer.
YELLOW Low energy activities Looking at a magazine. Making a short phone call. Background low concentration TV program
GREEN Deep Rest activities. Meditation. Listening to soothing music. Yoga. Deep breathing
BLUE Sleep & Naps

These are just examples of the level of energy used on certain things, but of course some people find some things easy that others find draining, so we can all make our own list, and then try to vary between high, medium and low level activities. Also try to make sure that 2-3 Green Deep Rest activities are included each day for your wellbeing. Even busy mums need to find the time for these( 15 mins) breaks.

For me it really made me think, because I thought that I could do no more than I was doing to cut back on the energy I was using, BUT I then realised that the hours I spend on my Laptop each day are contributing to my fatigue. I used to get paid to be on a computer all day, and I am now too ill to work, BUT I have been spending a large amount of my time on my laptop.

Also I have NEVER even considered looking after my emotional well being, which I now realise has been my down fall. I am very knowledgeable on nutrition and excersise, but have always felt guilty about “Just doing nothing”, and in fact I don’t know how to, so I will learn how to look after my mind and body while on this program.

I really thought I was doing nothing much now, and that I was doing the right things to recover, and I couldn’t understand why my fatigue and pain were increasing. I now know that I didn’t have a clue, and that just because I am sat or lieing down does not mean I am not using energy.

I apologise if this does not make any sense, but I type as the thoughts pop into my head, and my head is a jumble due to the fibro fog. I will keep you updated on my journey, but my appointments are usually about 6 weeks apart.

Now I must follow the advice, and get off my laptop as I have over done my 15 minutes already.

Jeany x x
Last edited by FluppyPuffy on Wed Jun 11, 2014 12:17 pm, edited 1 time in total.
Reason: Made some paragraphs clearer for easier reading.
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby migrembe » Wed Jun 11, 2014 9:08 am

Hi Jeany,

You sound very positive about it all, so i hope it helps you.

My energy levels are just pits right now, but i am not sure if that is part to do with the fact that my mood is quite low as well. Working on the principle of spoons i think it takes me all 12 to visit the bathroom in the morning, put some cereal in a bowl and a drink in a cup and feed the cat and then find somewhere to sit.

i don't have a TV but do use the computer as a TV sometimes, but not for long stretches, but it depends on how i am that day.

I have meditated for a number of years and try to remember to practice daily. I am also a Christian so spend time praying and reading scripture or having it read to me from an app on my phone. I also like to read, no more than 30 minutes at a time though.

If i have to go out, i have limited time, even if i sit down often - 2 hours is my limit and 3 shops. Cooking is an impossibility, warming a tin of soup up is my limit.

good luck with it all. Beverley :flowers:
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby SchroedingersCat » Wed Jun 11, 2014 9:38 am

Interesting. What area of the country are you in, Jeany? I know there's a specialist unit in the Leeds area as I was offered the chance to go to it when I was in the early days after diagnosis, but not heard of too many others.
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby Jeany » Wed Jun 11, 2014 9:40 am

Thanks Beverley.

I hope your feeling a bit better shortly.

Speak soon.

Jeany x
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby ginnene » Wed Jun 11, 2014 9:55 am

Hi jenny after reading your letter and what the 3different appointments involve i belive i might benifit from trying the same thing as you how would i go about staring this process?,would i need to ask my doc to refur me to somewhere and if so where?,i look forward to hearing from you and all the best on your journey x :-D
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby SchroedingersCat » Wed Jun 11, 2014 10:00 am

Never mind, just found an old post about this saying you're seeing the Leeds team.
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby carolad » Wed Jun 11, 2014 10:24 am

That all sounds very positive! I definitely believe in the emotional/physical connection. My physio says that everyone (not just fibro patients) holds tension and emotional trauma in different parts of their body...so some people may show up with back pain, others with IBS, headaches, skin conditions etc. I have no idea how it works or how she knows this...but she can tell my emotional state from assessing my body, even before I've told her what is going on in my life! So it is crucial that we learn to attend to our emotional/mental health and find ways to cope with stress.

I hope you continue to find it beneficial :)
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby Susan Stokes » Wed Jun 11, 2014 10:34 am

Hi Jeany,

That sounds very good, you're lucky to have access to such a team. My mantra has always been 'do a bit - have a sit' but I can see the merits of putting a timer on my 'doing'. Do let us know how you go on. Good luck.
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby FluppyPuffy » Wed Jun 11, 2014 12:21 pm

ginnene wrote:Hi jenny after reading your letter and what the 3different appointments involve i belive i might benifit from trying the same thing as you how would i go about staring this process?,would i need to ask my doc to refur me to somewhere and if so where?,i look forward to hearing from you and all the best on your journey x :-D

Talk to your GP about what the availability of a similar service in your area. They should be able to tell you about what they can offer as well as referring you onto them.
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby FluppyPuffy » Wed Jun 11, 2014 1:13 pm

The sorts of things you will be looking at are very similar to what I covered in the sessions I had with Nottingham CFS Service. When I had to do my colour chart, I was able to choose my own colour scheme, so I went with a variety of shades of pink :-D :-D :-D Some were metallic, some were glittery, and others were more pearlised, and it looked so pretty when it was filled in. It can be quite an eye~opener when you have a physical representation of your activities in front of you :shock: :shock: :shock: :shock: For me, the emotional wellbeing was about right as I had, and still do have, techniques in place from when I had some CBT~based sessions a few years previously. My major stumbling block was the activities involving high energy, and not factoring fatigue in when looking at my baseline for activities. Once I got to grips with this, everything else started slotting into their places.

I still use what I learnt from my sessions each day. A few things have changed, and sometimes it has gone a bit pear~shaped, but overall it has changed how I can get thru each day.

As you go along with the program, should you need a little more info or clarification on a particular area, as they sound very much like the people I saw, if you say so at the start of the session, which may well include a bit of a catch~up/update on how you have been going on, there will probably be a spot where it can be slotted into and covered.

Wrt the emotional side of things, my course suggested that the use of online sessions might be useful as they could be worked thru at a rate and order suitable to each person. One that was suggested was MoodJuice. I don't know how helpful it can be as I didn't use it due to what I had covered previously and already had in place, with you saying that emotional well being wasn't something you had considered, it might be worth a bit of a looky when you get chance. There are other online self~help resources which Mr Googley should be able to tell you about if you ask him.
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby Jeany » Wed Jun 11, 2014 2:14 pm

I have had some lovely replies from the post I put on earlier today.

Thank you to everyone.

Jeany x
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby humphreys » Wed Jun 11, 2014 9:06 pm

Hi Jeanie, I can only say you a very lucky person to have all these people looking after you, and helping you with this terrible condition, I myself have had fibro for 4yrs, When I was told, I was given a leaflet and that was it, some pain killers, and antidipresents, nothing more, I have had 3 appointments cancelled, I have not seen my thumatologist for nearly 2yrs. No one in the medical proffesion has offered any help for me. I have got worse and worse, especially the brain part of me, I forget things, get things the wrong way round, well you know what I mean. I have finally got an appointment in two weeks at the hospital, I know it will not be worth the journey.
I live on the Isle of Man, and there doesn't seem to be any place I can go to help myself. You are very lucky, and good luck to you.
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Re: MY 3rd appointment with The Specialis CFS/ME Hospital Te

Postby carolad » Wed Jun 11, 2014 10:38 pm

humphreys wrote:Hi Jeanie, I can only say you a very lucky person to have all these people looking after you, and helping you with this terrible condition, I myself have had fibro for 4yrs, When I was told, I was given a leaflet and that was it, some pain killers, and antidipresents, nothing more, I have had 3 appointments cancelled, I have not seen my thumatologist for nearly 2yrs. No one in the medical proffesion has offered any help for me. I have got worse and worse, especially the brain part of me, I forget things, get things the wrong way round, well you know what I mean. I have finally got an appointment in two weeks at the hospital, I know it will not be worth the journey.
I live on the Isle of Man, and there doesn't seem to be any place I can go to help myself. You are very lucky, and good luck to you.


It does seem to be a real postcode lottery in terms of what the NHS offers :( I have to say my experience with the NHS has not been good - I've had similar experiences to you and to be quite honest, I've just given up on the NHS now (apart from taking the drugs my GP prescribes!). I just try and help myself now, and I'm lucky to have found a fantastic private physio who helps me. Good luck with your hospital appointment, but if you don't get anywhere with it, it might be worth trying some other 'alternative' therapies.
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