Healthy Eating and ME

I've been tackling my ME in various different ways over the years but I suppose the one thing I found conflicting advice on was diet and supplements. I have tried various supplements, seen nutritionists, been tested for intolerances and allergies and never felt like anything was making me feel any more healthy and it was expensive!

With the ME and being unable to do much exercise, plus getting into my thirties and then after having my little boy, I began to feel quite unhealthy. I've always been around a size 12 (give or take a size... ) but it was noticeable that my skin was losing elasticity and I felt quite flabby and not particularly toned. I decided to cut back the calories and on two separate occasions, I lost quite a bit of weight. But I wasn't eating particularly healthy. I was eating foods that I could count calories on my fitness pal app (mainly shop bought) and it wasn't doing my ME any favours.

After my last relapse I decided that I needed to take a different tact.  Over the last few months I've been making a conscious effort to eat mainly 'clean' foods (foods that are unprocessed) and have eradicated most caffeine and sugar from my diet. I found it a little overwhelming to start with. A lot of the ingredients like raw cacao and agave nectar I had never really cooked or baked with plus the cost of buying them was pricey but now I'm finding it so easy to incorporate lots of healthy foods into my day.

                                                             Healthy breakfasts

                                                               Healthy Lunches

                                                   Strawberries out of our own garden!

I've been getting healthy eating inspiration from blogs and Instagram.The first blog I really came across  was Deliciously Ella. She was inspired to eat healthily after developing POTS and now claims to be 100% recovered through diet alone.

Another inspiring blog I read is Wholeheartedly Healthy. It's more of a lifestyle blog but there are lots of great recipes and it feels like something I can aspire to and is a bit more 'real'  than some of the other polished blogs.

On Instagram I follow some people who post gorgeous pictures of their eats; Stopsnapshare, SpoonieSophia , Nadshealthykitchen and MissMarzipancom. They help to keep me motivated!

As I've been recovering, I have found some intolerances to foods have dissipated and I no longer suffer from IBS. The foods that make me unwell are coffee and porridge which I can easily avoid. Weirdly I can eat uncooked oats no problem!

Do you find diet helps your illness? Do you find it tiring to cook or that ME restricts what you eat due to intolerances? Do you have any other suggestions for inspirational blogs or Instagram accounts I could check out?

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...

ME clinic appointment 8

I had another appointment at the ME clinic last week and explained that I felt I had been pushing things too far. I wasn't sure how my therapist would react but she was very understanding and acknowledged that she had given me too much to focus on. She recognised that the cardio circuit was tough especially on top of work and looking after my little boy. So I've gone back to the walking with stretches on the days I am working and gentle yoga on the days I'm not. I think that will hopefully give me a baseline and if after a few weeks that's going ok then I can step it up again slightly.

I've been really knocked off with my hormones this month which has been frustrating and I stayed at my parents for a few days so my diet and routine has slipped. It's very noticeable when I stray away from the things that help me, like the healthy eating and the routines I have,  but sometimes it's worth the payback  ;)

Because my energy levels have been a bit lower and my brain fog has been bad, I've found it tough entertaining my four year old.  I'm always aware of the potential for him feeling lonely as an only child (I also have no siblings so have experienced it first hand!) I try to ensure on the days I am off work and he has no nursery, that he has contact with other kids. Today we went to this very cool kids cafe which has a play area for babies and preschoolers. The bonus is that there is a nursery nurse who watches them while you have a quiet coffee. Can you spot the theme!?

ME Awareness Day

Today is international ME awareness day so I'm joining in with lots of other bloggers to write a post about how ME affects me. I'm lucky to have mild ME which means that generally I can manage to live, what looks to the outsider, a relatively normal life and the reason we call it an invisible illness, however it still impacts on my life. I cannot do the amount of exercising and socialising that I used to do before I became unwell in November 2002. I regularly experience flares in my symptoms (some of which are easier to recognise the triggers for than others) and have had a few serious relapses over the years.   I struggle with my memory and concentration, i'm sensitive to alcohol, I experience cardiac issues and I never wake up feeling refreshed!
However I know I'm luckier than others more severely affected and as I've improved greatly over the years I keep positive that I will continue to do so. Anyway I've answered a few basic questions about ME and my experience. I hope you find it helpful.

What is ME? 

ME or myalgic encephalomyelitis is a disabling neurological condition. The symptoms include; 

Fatigue (persistent) 

Pain

Brain fog (problems with concentration , memory) 

Problems with mood and anxiety

Issues with the nervous system (dizziness, poor temperature control, palpitations) 

Sleep issues 

Visual disturbances 

Increased sensitivities (foods, medication, alcohol) 

Digestive problems 

This is only a snapshot of symptoms for more info look at action for me symptoms

What causes ME? 

No one knows yet however pathogens, viruses, immunisations and extreme stress (trauma) have been implicated as triggers. A stressful lifestyle appears to be a contributory factor or certainly perpetuates it. 

For me it hit very suddenly. I had been working shifts in a busy mental health ward and burning the candle at both ends, regularly going out drinking and clubbing with friends. It was after a night out that I woke up feeling like the life had been sucked right out of me. I had a flu type illness but it didn't go away... In hindsight I had noticed for a few months previous that I was a bit more `run down` and maybe this created the perfect environment for ME to develop. 

How is it treated? 

There are no medical treatments as yet. Certain medication can help mood issues, offer pain relief and help with sleep but no cure or treatment has yet been discovered to alleviate the symptoms of ME. Hence the reason the ME community are trying to raise awareness. 

What helps me? 

Pacing which is a way of using and storing energy to ensure that you keep your health at a stable level and minimise symptoms. This involves taking regular rests and not pushing your body by overexerting so you end up having a `crash`. 

Meditation is very helpful for me in terms of relaxation and reducing anxious feelings. 

A healthy diet. I don't drink coffee as I'm very sensitive to it and generally try to reduce my caffeine levels. I have reduced my sugar intake and try to eat as little processed foods as I can. 

Gentle exercise. Walking, gentle yoga and stretching help to keep my muscles and heart in shape (to some degree!) 

Keeping stress levels down. I work in a challenging job but luckily have a supportive team. I try to let things go that irritate me and cause stress but its not always easy! Mindfulness and meditation help somewhat with this. 

What hinders me? 

My hormones! Every month I feel a lot worse just before my period. I suffer extreme PMS. 

Alcohol. I still drink but I pay for it... I find three drinks is usually the maximum I can cope with and I get very drunk very quickly! 

Caffeine is a big no no. 

Too much exercise-  causes post exertional malaise. 

Sugar sends my blood sugars haywire and affects my energy levels. 

Stress! 

Extremes in temperature affect me but in do feel better in the sunshine. Shame I live in Scotland where we don't see the sun too often ;) 

So this is a brief overview of my experience of this hideous illness. I`m more accepting of it now and try to manage it as best as I can but I still wouldn`t wish it on my worst enemy! 

If you are on twitter check out #may12blogbomb for other blog posts on ME. 

Hope you are all having a happy and healthy day x 

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

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!

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?