my weekend

My in laws hired a cottage for the week down in High Newton in Northumberland; a little part of the world that I hadn't really explored before. We only stayed the night but my little boy is having a few more days down there with his cousins before I collect him again on Tuesday. Its only an hour and a half down the road from us so hopefully we will be able to check it out again in the summer. I didn't take a lot of photos as we weren't there long but here's some snaps I did take.

ME Clinic -appt 6. And so GET begins...

This week I've been off work on annual leave but have had a viral infection, which has floored me a bit.  However we managed to get the rest of the woodchip off (hoorah!) but it left a fairly uneven roof and walls and we felt somewhat deflated. However my amazingly talented parents came to the rescue and lined my ceiling and walls with lining paper. It looks like a new room! So now the fun bit - choosing paint colours :)

Anyway the last ME appt was focused on GET and setting goals. I know GET, or graded exercise therapy, is a controversial topic in ME and I don`t want to get into the politics of this. I know some people have really strong feelings about it and I totally get that. However I have recovered to the point where I can manage to function fairly well; working, socialising and managing other daily activities but I need to work on my stamina and building myself up to do more fitness.  It has taken me eleven years to get here, building on my progress bit by bit. So for me GET feels like its happening at the right time and I believe the routine will help me set a baseline that I can build on rather than haphazardly taking on various challenges that knock me back!

So the goals...As a nurse myself I use goal setting with all my clients but they tend to be client led. I felt that my therapist already had these goals laid out before I`d even stepped into the room! However they did seem to be in line with what I had been thinking about. I think I would have liked to have felt more involved in the process though...

As I mentioned in my last post I was keen to try Pilates and so one of her colleagues came in and did some one to one work with me. Privately I'm sure this would be quite expensive so that was definitely a bonus. Here is my goal sheet of activities I have to tick off each day:

At the moment I'm managing a 10 minute walk to the bus stop 3 x weekly which I need to try and increase to 2 x day. At the weekend I usually do a 1\2 hour walk so I've to keep this up and 5 x days a week I have to try doing stretches and my pilates exercises ( I can vary the days). Also I've to aim for relaxation twice a day. On friday I actually managed 4 x 10 minute walks and on Saturday did the Pilates and stretches without any payback.  With having this viral infection I haven't managed to stick with the programme this week but its another three weeks until I see her and so hopefully I will be back on it in a few days.

In fairness she told me to listen to my body and not push myself so it didn't feel like there was any huge expectation, just to try and see how much I could manage comfortably. I`ll keep you all posted!

ME clinic - 5th appt and The Big Move!

Appointment no 5 at the clinic wasn't a great success. I shouldn't have arranged to see my therapist the day before I moved house. I felt really stressed and she picked up on some issues that were quite sensitive to me that almost had me in tears. We talked about work and my caseload and my need to prove that I can keep on top of everything, again my perfectionist nature... She then went on to ask me about my career path and that hit a raw nerve, as understandably I feel like I probably would have progressed onto something more challenging if I hadn't been struck down with ME and it had obliterated all my confidence. Anyway we didn't cover much in the way of lifestyle management stuff except for her to say that she was hoping to get my exercise levels up to 1/2 hour a day five times a week! This freaked me out a bit until she explained that I could do this in 10 minute chunks which although seems daunting, it is far more realistic. I've been thinking since the appt about my work and career choice and I'm starting to feel more content again with where i am and what I'm doing. Of course extra cash and more autonomy would be nice but I enjoy my work and even after ten years I never dread going in. Its a challenging job and although a cliche, i feel like I do make a difference in some way to people's lives. Also although every day brings new challenges there is an element of routine to it which can only be a good thing for me trying to stablise at the moment. So I've managed to challenge a lot of my negative thinking and feel much more content :)

The move itself wasn't a pleasant experience and I hope to not repeat it any time soon! For some reason, I began to question the decision to stay in Edinburgh and wondered if we had done the right thing. On top of that I was trying to keep my stress levels down, feeling panicked at the amount of packing we still had to do two days before it and working out all the bank transfers and other paperwork stuff. I know I'm a perfectionist and it's my big issue but I don't delegate very well and this is why...My other half was given the job of organising the removals and although he did that, he didn't pay them, so needless to say I got a follow up phone call requesting payment. Not good and proof that I'm better off doing things myself....

When we stepped into the property my heart sank. When we were viewing, the owners had quite a bit of furniture in the lounge.Unbeknownst to us they had concealed the fact they had ripped out a fireplace and not replaced the skirting or carpet, leaving a square shaped hole in the floor... To add to that, there were pen marks on the radiators and wallpaper and the kitchen was rather grimy. Luckily my parents helped to clean and spruce it up and with our furniture in, its now looking a great deal better than it was. And I'm feeling more settled and am actually starting to love it. I have a ten minute walk to the bus stop in the mornings which means I'm starting to incorporate more exercise in and have been managing it alright. Both boys are also a lot happier in the house and are enjoying the extra space and garden.

ME clinic - 4th appt and our holiday

At my fourth appointment we chatted about my diaries again, a little about sleep hygiene and I was given some gentle stretches to try which I have been trying to incorporate into my day. The therapist also suggested that I see one of her colleagues over the next few weeks to look at some pilates exercises which I'm really keen to do as I miss my yoga classes.

The following week we went on holiday to Glencoe which was a lovely relaxing week. We rented a cottage which was pretty isolated but in a beautiful setting and did some walking, touristy things and even managed to go up the cable car to do some ski-ing. I was really pleased that although I didn't do a lot, just a few small runs on the nursery slope, that it was a big achievement and I didn't really have any payback over the subsequent few days.

Here are some photos of our week before the house moving chaos began!

ME Clinic - 3rd Appointment

I had my third appointment on Friday. I'm still completing my activity diaries and we talked about how I'm breaking my days up a bit better i.e. not having such big chunks of medium or high energy activities and am switching between mental and physical tasks. I'm definitely thinking more about what I'm doing during the day and prioritising what needs to be done and what can wait. I really notice my instant reaction to things that happen that are stressful and how my body and mind responds to them. My therapist spoke about how the body is often on 'high alert' in ME and sufferers reactions to stress are amplified, which I can really relate to. Pre-ME I would become nervous or stressed but now I feel like the slightest stress makes me feel quite disconnected, brainfogged and anxious which then leaves me feeling drained minutes, hours or days afterwards. It's funny though as most people who know me say that I never really look that distressed but I have a habit of internalising things..So to break that cycle I've learned that I need to delegate tasks to my other half so I'm not taking everything on, leaving things that don't need to be actioned straight away and practising more relaxation. I also need to stay in the moment and not start catastrophizing (I know I've slipped into CBT talk now....) I think that's where mindfulness would be really helpful.

We also chatted about exercise. I'm having to give up my yoga class due to moving house and the location of the class which is a real shame as I've been finding it very helpful. I'm on the lookout for another though and in the meantime have ordered the Beat Fatigue with Yoga DVD which I've used in the past and would recommend. The therapist has given me some stretches to do and if I get on ok with them then we'll look at some others at the next appointment. She's been adapting them to a yoga style which makes them a bit more interesting to do.

So until the next appointment the main focus is to be more zen like :)

                                                  Photo: taken at Lake Como September 2012

ME Clinic - 2nd Appointment

Well yesterday I had my second appointment where I took along my activity diaries.
But before we looked at those, I was asked to do some exercises - basically a short walk across the room then a one minute stair climb (up and down four steps consistently) and then a two minute continual corridor walk. The physio did advise me that I could have short stops or stop completely if I felt tired, so there was no real pressure but of course you know me... I had also just walked ten minutes from the bus stop to the hospital so I did feel quite worn out! She took my resting pulse and then checked it again after each exercise. I had to rate how difficult I had found the exercises on the Borg scale (see below). Basically the number you rate on the Borg scale x 10 should correlate to your pulse rate However although my pulse rate was 104 after the stair climb I rated it at around 16 which should have meant my pulse was 160. Apparently this is pretty common with ME sufferers and shows how easily fatigued we get with exercise.

Onto the activity diaries. Here is my week:  

 So as you can see there are large chunks of orange (medium energy activity) and not a lot of green (low energy) or rest interspersed with them, so the physio was quite strict with me! She suggested some ways of looking at my week and how i could incorporate more restful activities and be a little kinder to myself. But she took a pretty person centred approach, encouraging me to analyse my week and see what changes could be made. So today I have been a lot more mindful of how i need to stop thinking that I 'should' be doing things and look at balancing my day more, putting my health first. Simple changes like having a relaxing lunch, making sure I take my allocated 1/2 hour and listening to relaxation music on the bus instead of having the radio on while flicking through twitter and facebook on my smartphone - a recipe for brainfog! can reduce orange to green. The only difficulty I had was with her comment that I can't be spontaneous and every activity needs to be considered carefully - in other words keeping to a routine!

My sleep had been a bit out of kilter with thinking about the house move so I've been a lot stricter with myself the last few nights; having a camomile tea and not using the computer or my phone 1/2 hour before bed.

Next time I think we will look more at how adrenaline affects the body and the 'starter-finisher'; two subjects that will be very useful to me!

It seems like the topics being covered are pretty similar to other ME/CFS clinics. It would be great to hear your experiences - feel free to share!

ME clinic - first appointment

I had my first appt with the ME clinic last week and I have to say I am feeling pretty positive about it.  I saw a senior physiotherapist (the clinic is also run by psychologists) and focuses on a CBT and GET based approach (cognitive behavioural therapy and graded exercise therapy for those not familiar with these terms).

The first appointment consisted of me 'telling my story' about becoming unwell, how things have been for me over the last eleven years and what helps and negatively affects my health. The physio was very understanding and appeared to have a good knowledge of ME (always reassuring!)

She talked about the role of adrenaline and how it appears to affect a lot of sufferers who feel as though their system is running on overdrive, something I can relate to. To obtain a picture of what my week is like and to try and balance this a bit better, I've  been given some activity diaries to complete and have to highlight these to show whether I'm resting or participating in a low, medium or high energy activity.  Initially if was quite difficult for me to recognise what categories to place activities in and also it's a very personal area depending on how affected someone is and their limitations.  I've got to grips with it now though and have been finding it useful to see exactly what I'm doing in a day and how my days can really fluctuate. I've noticed my diary has had some huge blocks of highlighted orange (medium energy activities) and so I need to try and ensure that I have some low energy and rest periods around these so they are spaced out a bit more. But I'm guessing that in a fortnight at my next appointment, the physio will help me to look at this.

In terms of goals i know the clinic isn't offering a cure and is a lifestyle management course so my main aims are to balance my week better and start incorporating some more gentle exercise into my week and build on this. The physio seemed happy with this plan. So I'll keep you updated as to how it goes.

On an even more exciting note we have a house! In an area that we wanted and move in there in around six weeks so lots of packing and paperwork to be done. Will be interesting to see how my activity diary looks as the date gets closer! Eek!