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!

The stress of house hunting

I've been busy the last few weeks absorbed in the Breaking Bad boxsets which I have to say I'm loving! But aside from that we've also been house hunting. And we've gone full circle with our plans - we've decided to stay in Edinburgh!

A few months of job hunting up north has made us realise that although our family would be closer we are unlikely to get work up there. Or if we did it's likely it would be shift work and we would have to drop our wages as it's difficult to stay on the same band when you move to another NHS trust. Yes moving north meant the house prices would be cheaper, the schools are excellent but there are less amenities and opportunities and overall it seems like our quality of life wouldn't be so good. We've also built a life here in Edinburgh having been in the Lothians for the past twelve years and it would be tough to give that up...

 So we've started looking for properties. Edinburgh is not a cheap city to live in, especially when you're trying to get something in a good school catchment. But I think we can do it and the bonus is that where we are renting is already in a good catchment so there shouldn't really be too much pressure to move before August although in an ideal world...

 I have quite been stressed over these last few weeks and my ME has flared up at times. The whole process of buying, with the closing dates and being outbid, really gets to me and as a result I even missed a hospital appointment as I was so distracted -oops! I'd noticed I was feeling really irritable and feeling despondent as it reminded me of how difficult it had been back in the early 2000's when we were first time buyers and properties were going for well over the valuation.

 Luckily I recognised that feeling this way was not going to help my health and I can't risk having another relapse. I am a true believer in the saying 'what's for you wont go by you'. So I've been challenging my negative thoughts and worries about the future and I'm trying to focus on the present, practising mindfulness, and have started back at my yoga class. So although the process of searching for properties, viewing them and liasing with solicitors isn't the most relaxing, I recognise that I need to take everything a step at a time and keep grounded, not allowing myself to get caught up in the 'what if's and but's'. I've also signed up to 100 happy days which means I'm taking photos or making note of things that have made me smile each day. It's worth checking out!

 Hope you are all keeping well and stress free. I'm signing off now - back to Breaking Bad...

New Year, New Things

As I find shops too busy and tiring (and its impossible to browse with a four year old) I do most of my shopping all year round online and got some online bargains in the New Year sales. However I did also manage a few hours out in Edinburgh with a friend and picked up a couple of treats for myself (and my little boy).

I bought a couple of pairs of jeans; a skinny grey pair from new look at the bargain price of £8! and these bootcut jeans from Oasis which were £30, a bit more than i'd hoped to pay but they are a very nice fit. Both pairs were a 34inch length which is perfect for me. I find it can be really difficult trying to get long length jeans/trousers in the sales.

The red bird top is from Alice and You at Dorothy Perkins (around £10) and the Tall blue marl jumper was also around £10 from DP.

I also got a pair of cute little pumps for £8 for New Look.

On my venture into town yesterday, I got this cute little stag badge for a few pounds from a quirky little sweet shop just off the Royal Mile. I'm not sure if I've said before but I am obsessed with stags and have various stag related items dotted round the house, including a pair of antlers hanging in my lounge....

Although we agreed to limit our spending on each other at Christmas, I opened this gorgeous bag from my husband (another obsession of mine is Harris Tweed).

So I'm feeling pretty chuffed with my bargains and my bag. Did you manage to pick up anything in the sales?

A realisation - becoming middle aged

I don't really like making new year's resolutions but I do have a guilty secret and that's compiling a list of things to do before I'm 40. I was thinking that I have a fair bit to go before that happens but then the other day I realised that I actually turn 35 in the summer. Eeek! I find that extremely hard to get my head around. Turning 30 was actually ok for me; I was pregnant, married, a house-owner, my health was stable and I had a job. So for me I felt I had achieved a lot of things I had wanted to do. It's entering the territory of 'middle aged' that scares me. It's stereotyping I know but the image I have in my head of someone middle aged is dowdy, dull and sensible. Far from what I believe I am and most of my friends the same age are (and in fairness most people who could be termed middle aged!). And I don't like labels and refuse to be boxed in by them, probably as much as I like to push against the label of ME/CFS! So I'm going to carry on as if I'm still 27 (this is the age in my head that I am stuck at). And although I haven't made resolutions for 2014, my main goal is to continue to be healthy, listen to my body and keep going with my meditation and yoga, as well as the practical - finding a new house!


I have a board on Pinterest that I'm using to collect all my ideas of what I would like to achieve before 40 (please check it out and follow me if you are on there):

• Write a short story
• Learn Spanish fluently - I did some night classes a few years ago but didn't keep it up
• Learn Guitar - I'm fairly musical anyway and did some chords in my teenage years but would like to brush up
• Go travelling - South America, The States - too many to name individually!
• Learn to dance to Northern Soul
• Have a vintage style makeover and photo shoot
• Go skinny dipping - I've done wild swimming while camping but never naked! 

I'm sure I will add to that list but for now its all about not putting too much pressure on myself, keeping my health stable and trying to be the best mum I can be. Next year my little boy starts school which is also going to be very traumatic for me! 

Do you have goals, dreams, aspirations? Even with a chronic illness that fluctuates I still feel I need to keep positive and aim high! 

The Festive Season

I'm not going to go into too much detail about coping with Christmas as there are already some great blogs and articles already out there; the lovely Hayley's guide to surviving Christmas and this from Cort Johnson at Health Rising, which discusses expectations that we have of ourselves and that others have of us. There is also an article on the  Action for ME website which is worth a read.  Finally A Thrifty Mrs and Miss Thrifty's blogs have given me quite a few tips on cutting costs this year.

I have to admit that despite pacing the Christmas shopping and having a husband who is on a par with Jamie Oliver most days, I still feel anxious about the big day. I think sites like Pinterest (jeez I have such a love/hate relationship with it) make you feel like everyone else is having a wonderful 'Martha Stewart' time of homemade christmas cards, freshly baked mince pies and beautifully presented, well behaved children. When in reality, my tree looks pretty wonky from my little boy knocking it over and half of my nice decorations are chipped or broken.(Why is it never the crappy ikeas ones that take a knock? It's always the nice Gisela Graham or John Lewis baubles grrr... ) Also due to my perfectionist personality, I have taken over the responsibility of buying most of my family and my other half's family gifts. Just to put you in the picture, its likely they would have nothing to open on Christmas day if it was left to him.... This comparison definitely applies to me!

Anyway we've decided to have Christmas at ours this year. My parents are coming and have offered to make a Clootie Dumpling; a Scottish steamed pudding, which is a lot nicer than Christmas pudding in my books. Luckily my folks are pretty low maintenance and will be quite happy to just chill out and accept whatever (I think...). My other half is a keen cook so will rustle up a very edible turkey dinner (I hope...) and I can be hostess/look pretty in my Christmas outfit and r̶e̶l̶a̶x̶ be forced to play Star Wars with my little boy.

This year will be a much happier time for me though. Last year, I had a horrendous relapse and could barely even stand long enough to decorate the tree or sit and eat a meal without retreating back to bed, so I'm extremely grateful that my health has improved and my symptoms are back to being mild and more manageable.

I have my first ME/CFS clinic appointment in January which I'm hoping will help to equip me with some more skills for managing my illness and hopefully improving my strength a bit more.
Let's hope that 2014 brings continued better health :)

Hormones

I had been doing pretty well on the sugar and caffeine front until the last few days...

Image: ondietandhealth.com

Every month, there is a week that causes me so much emotional and physical pain. Yes it's hormones! For me, there is a definite link between ME/CFS and hormones.

Prior to getting ill, I did suffer from PMS and also believe I was generally mildly dysthymic (although I could control this most of the time with CBT) but since becoming unwell it has increased tenfold. I get really irritable, negative in my outlook, feel anxious, get acne prone skin, oily hair, and am bloated, fatigued and notice an increase in my ME symptoms. Although I'm lucky enough not to experience pain generally with my ME, my muscles become very tender. My little boy loves rough play and so when he jumps on me or even grabs me, without much force, it can be excruciating! I also had Shiatsu on Saturday for the first time and wow that hurt! The bloating also causes a bit of pain.

The anxiety I experience is tough to deal with but I feel if I can recognise what the cause is and distract myself, then I can control it (rather than it controlling me). I follow this blog which is great for giving tips on how to handle anxiety in various situations.

During this time of the month, I try not to take too much on (which often means avoiding social situations or big things at work), get plenty of sleep, drink lots of water (which helps with the bloating), try and eat as healthily as I can (although i crave sugar like mad!) and use mindfulness and CBT to challenge any negative thoughts. It's a time I really dread every month and I envy those who seem to breeze through those days.

Do you find your ME/CFS symptoms change at certain times of the month? What have you found that helps PMS?