Last ME clinic appointment

I had my last ME clinic appointment two weeks ago just before I headed off on holiday for a week.

We basically reviewed all the topics we had gone through since first meeting in January and designed a basic self management plan:

Sleep - go to bed at a set time every night and get up at the same time. Also setting myself an alarm to prompt me to get ready for bed.

Computer time - setting myself an alarm so I don't stay on too long.

Diet - pre plan meals and prepare food to take into work so I'm not just grabbing and eating unhealthy food at lunchtimes. Reducing sugar and caffeine. I need something nutritious and healthy to see me through the afternoons!

Exercise - to be consistent and find something I enjoy doing which at the moment is really the stretches and a bit of light yoga.

Managing anxiety - using the techniques I have to manage stress and to cope with anxiety provoking situations.

Looking out for warning sighs of lapse/relapse - Listening to my body and noticing any symptoms that indicate that I might be slipping. For me difficulty finding words, slurred speech and feeling itchy are red flags that I may have overdone it and need to scale activities back.

Thinking - stopping myself thinking in 'all or nothing' terms and not worrying about what other people 'might' be thinking of me. Continue to work on my mood and thought patterns.

Relaxation - doing regular relaxation/meditation.

Pacing - to ensure I don't adopt the starter/finisher approach. Jobs can always be left till later!

I'm due to see the physio again in October for a three month follow up. Hopefully when I go back things will have remained stable or may even have improved a bit. I stay forever optimistic!

Anyway the holiday we were on was slightly bittersweet for me. It was a camping trip to the North West of Scotland near where we had stayed almost twelve years ago, just prior to me getting unwell.
We went back to the beach that we had stayed at in 2002. I remembered cycling up the steep hill and a good few miles to the local shop nearly every day for provisions. Not a trip I would manage now without a good bit of payback!
However we had a really nice time reminiscing and the day we were at the beach was gorgeous weather. We had a barbecue and went rock pooling and paddling in the sea. I feel blessed to stay in such a beautiful country!

What I've been doing #2

Socialising

Last weekend it was our seventh wedding anniversary and we went camping with some friends. We go every year as they also celebrate their anniversary then too and it's nice for the kids to all see each other as we live over a hundred miles away. It was a full moon and the weather was pretty kind to us.

 

 

 

All in all it was a lovely weekend although it was quite busy!

 

It was also my birthday at the weekend and I turned the grand age of 35... I had mixed feelings about this. See my earlier blog post - becoming middle aged

However I am embracing it and had booked tickets to one of the Edinburgh Zoo late nights, which included; live music, a silent disco, different street food stalls, face painting?! and access to the Zoo enclosures at night to see the animals getting ready for their kip! It was a great night and I managed to get through it ok.

 

Unfortunately though after those viral infections that I'd had pretty much back to back, I didn't feel great in the lead up to it. On Friday afternoon, I had quite a high level of fatigue, itchy skin and burning eyes and as a result of not slowing down I have had the inevitable payback. The last few days I have been feeling more fatigued, irritable and have had to cut back on the exercise. I have had a terrible headache on and off, which fortunately is a symptom I don't get much now although I used to, and don't know whether it's due to the tail end of the virus or an ME symptom. Paracetamol has been working though and I have been drinking lots of water.

For my birthday I got a lovely picnic hamper from my husband and an anorak make up bag. From my friends, I got really nice jewellery, bath products and make up. Plus I got quite a bit of money - always a bonus!

Watching

I've managed to finish season two of 'Orange is the New Black' and I thought it was brilliant, far exceeding the first season. Can't wait for season three.

                                                                                             Image: Jill Greenberg 2013


I also watched the final episode of Fargo which I was a little bit disappointed with. I feel after the level of violence and 'on the edge of your seat' action, that the ending faltered a bit. Still worth a watch though.

                                                                                               Image: edgecastcdn.net

Wallender also came to an end this week. Such a great series, although I do find it requires a lot of concentration with the subtitles, especially watching it on catch up on the smaller computer screen. Apparently 540,000 people watched the finale though so I'm not the only one to have been enjoying it :)


That's been my week. A few ups and downs. but hopefully scaling the activities back means I'll be back to 'normal' soon! Hope you've all had a happy and healthy week.

ME/CFS clinic appt 8 - Stress Management

Appointment 8 happened last week and focused on stress management and a bit of CBT - challenging thoughts.

The stress management was helpful and outlined what can cause stress:

Taking on more than you can do and not allowing yourself to have enough relaxation time.
For me definitely! I recognised recently that a lot of the time I offer to take on more at work than others just because I don't want my colleagues/ manager to feel like I can't manage it. I feel like I have to prove myself. And in terms of socialising, I don't like to miss out even if that means getting payback. I am however getting better at all of this and am prioritising what really matters.

Never saying 'No' to people.
Well I feel proud to say that I am also improving in this area too. After that assertiveness course I feel I am getting my needs met now and thinking more about consequences before I reply with a 'yes I'll do it!' 

Never being satisfied with what you have achieved.
This is an issue for me that I desperately need to look at. Using decorating the house as an example, we have only been in three months and have done quite a bit, transforming the living room and sorting out a playroom and bedroom for my little boy. However I still find myself driven to have a 'perfect home' and need to rein myself back a lot of the time and remind myself that it's a work in progress and it's all about the pacing!  The perfectionist element of my personality is really overwhelming at times! And discipline is not always my strong point...

Getting frustrated by my situation.
Yes I do. Especially when some weeks can be so great and then for a reason that is self-inflicted, or something that I just can't pinpoint, I slip again. I'm learning to be a lot kinder to myself though and more accepting of my situation.


We looked at unhelpful thinking patterns (again! I think it might be a lifelong process!) and the Worry Tree which I hadn't seen before:

 

                                                                                                                                                      
During this session it felt like things were beginning to come to an end. We've covered all of the lifestyle management topics that the clinic offers and in terms of beginning to exercise, I feel I know where I need to start and how to build myself up slowly. So we are going to have a final session in a month's time and then there will be a follow up three month's after this. I think the co-ordinator for Action for ME in Scotland is looking for feedback on how people have found the clinic so I plan to get in touch with her, as overall I've found it a positive and helpful experience and hope that others can benefit from it.

What I've been doing...

Unfortunately I've had another viral infection/sinus infection so haven't been able to keep up the plan from the last ME clinic meeting, that I would do either yoga or stretches on a daily basis. I have managed to keep going to work though and in the main, do the walk to and from the bus stop (apart from a couple of times when I had to get a lift due to complete exhaustion...) It's been disappointing but I've managed to keep fairly upbeat and optimistic about the setback.

While I've been poorly I've had quite a bit of down time.  And I'm super excited that I now have a laptop. For the last few months I've been using my tablet to get online as a certain someone spilled juice on my last computer...

Reading

I've been reading this book for the last few months. I find I either race through a book if I'm really into it or I dip in and out for a longer period if it's a grower. This book was pretty gripping to start with and the title states exactly what it's about (if I went into any more detail I would give away spoilers so I'll keep schtum). I'm enjoying it but it has dragged a bit at times when the chapters have reverted to his past life. However I'm nearly finished so I'm hoping the ending will blow me away!

Watching

I'm signed up to Netflix and have watched a couple of good indie films. The first was Amour and set in an apartment in Paris. It focused on the relationship of an octogenarian couple who were faced with the emotional and physical demise of the wife, due to experiencing a stroke. It was very heart-warming and heart-breaking and probably could have ended 1/2 hour before it did but all the same I thought it was a good film.

Another film I watched was 'Breathe In' with Guy Pearce and Felicity Jones. The theme was: American couple with a daughter, who are not entirely happy in their relationship, take in an English exchange student and Dad ends up having an affair with the student. Sounds a bit predictable but it was actually very tastefully done and the acting was superb. I liked this film more than 'Like Crazy' directed by the same guy that also starred Felicity. Worth checking out...

In terms of TV I'm enjoying this new series of Wallender (the Danish crime drama) and also Fargo (the American crime series based on the film of the same name). Fargo only has a few weeks to go so it will be interesting to see how it ends.

Socialising

Although I've been poorly I have managed out a couple of times, the first occasion was to see my friend for an hour and since it was a sunny day, we headed down to the park and picked up a couple of healthy juice and sugar free cakes. Felt indulgent in a saintly way!

The other time was a short walk in the woods beside my house. Although Rhodendrons are considered a weed here due to not being indigenous to this country I thought the flowers were still very pretty.

Buying

I've been looking for a showerproof jacket. I have a 'technical' waterproof jacket that I bought a few years back but it's pretty fugly and although it's required for the Scottish climate, I needed something a bit more trendy for work/ wearing to the park so I opted for this. It hasn't arrived yet but I'm hoping it will suit. I liked the Boden wax jackets but this was half the price! And it came in Tall which is a bonus.

Listening 

I've been listening to quite a bit of stuff on Spotify and am really liking Foxygen (although I'm quite late to the party I think) and also Parquet Courts. They sound a bit like an early Kings of Leon but cooler...

So that's been my week. I seem to be coming out the other side of this bug so hopefully will get back to downward dog soon...

Assertiveness and ME

This week I attended an assertiveness course through work. It all came about after a dip in my confidence following my three months of sick leave due to a relapse at the end of 2012. It took me a while to get back to how I was pre relapse and as a result I was understandably a bit anxious. My manager suggested this course. However there were no spaces available at the time so roll on 15 months and he advised me that I was now able to go on the course. I wasn't sure I needed it to be honest. I felt like I was managing well at work now and could be assertive when I need to be. However I decided that there was nothing to lose and went along.

I thought that the course might have just involved telling us the differences between submissive, aggressive and assertive behaviour and the skills needed to assert yourself. Actually surprisingly there was a lot of self awareness to be done and I learned quite a bit about myself and the reasons why I communicate in a particular way; the influence of my parents, school, peers, work, my relationships. Although this course was specifically for work, in my personal life there are quite a few situations that mean I need to be aware of my communication style. These include my relationships with friends, family and also my son. With assertive behaviour you have a right to have your needs met but equally need to respect the views of others.

We did a few questionnaires during the course and unsurprisingly I came out as being a 'people pleaser' and a 'perfectionist'. I often put others needs before my own. I think that's quite a common trait in ME sufferers. I have a habit of agreeing to do things without thinking about the impact first. So that's the first thing I need to look at. Secondly I tend to hold onto stuff I am unhappy about until it gets too much and then I let it out, ranting for a while - not helpful as the person on the receiving end gets defensive and  switches off meaning there is no productive outcome.

Being submissive and aggressive are actually pretty tiring and stressful styles of communication and as a result take a lot out of us. Although initially it can be uncomfortable, getting into the habit of being assertive can only be a good thing. It can make us feel more empowered and our voice gets heard, while the other person/people also feels listened to and respected.

We focused on the drama triangle (karpman) nd transactional analysis (Berne) should you wish to look into what I've talked about further.

Do you find it hard to be assertive?

ME/CFS clinic - appointment 7 heart rate and cardio

The time between appointments has been a bit longer hence the reason I haven't blogged in a while. At my last appt on Friday we chatted about my progress and I explained that the viral infection had hindered things but now I'm managing two ten minute walks on work days and have been doing the Pilates exercises twice a week.

To be honest I'm not sure Pilates is for me. I find it a chore to do and think I would much prefer to do yoga so I think I`ll go back to my `beat fatigue with yoga` DVD.

My therapist explained about MET which is the metabolic equivalents of how intense an activity is. So making the bed, carrying heavy groceries, swimming and unloading the washing machine are all considered to be of high MET value. She gave me a calculation to figure out what my maximum heart rate should be during exercise so I can avoid PEM (post exertional malaise) the next day. Interestingly she said this also applies to a regular person doing exercise (although they could maybe push up to 80% of their resting heart rate). 

Here is the calculation:

220- (your age) = (answer)  then x by 0.6 = (answer) then x by either 0.60 or 0.75 depending on whether you want to work at 60 or 75% of your heart rate (or anywhere in between). The total should give you a number roughly between 100 and 140. Hopefully that makes sense as maths was never my strong point at school!

I now have a cardio circuit to do but I`m going to attempt these on the days I'm not working. Will let you next time how its gone. Hoping I`ll be as fit as this by the end of the programme :D

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!

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?