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.

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

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...

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?

Soundtrack to my afternoon

At the weekend I hosted an afternoon tea party which seemed pretty successful. I hadn't set up any music but had the radio on and just by chance 6music played some jazz and chilled out tunes which were quite fitting with the ambience. 

Just prior to my visitors arriving I'd been listening to an interview with Kim Gordon from Sonic Youth (one of my big girl crushes!) Music is such a big part of my life and I haven't really shared what I'm in to. Although to be honest, I don't really know where to start!

Even during the bad times with my illness, I've always listened to music, I know I'm lucky as I'm aware some people with ME are very sensitive to sound. I've even dragged myself along exhausted to gigs and festivals as I've wanted to see the particular band/singer so much!

My tastes vary; as a teenager I was into a lot of dance music and indie but listened to a lot of sixties, jazz and classical (I played viola and violin and still do sometimes!), then an old boyfriend was into rap and hip-hop which I started listening to in my late teens/ early twenties. But my main influence with music was my husband. He introduced me to a lot of different bands and genres and I would say he has very similar tastes to myself. When we first got together he made me up a few mix-tapes for the car which I still have (and treasure even though I've nothing to play them on!)

I love to listen to my old dance tunes and reminisce about the past fondly. For me music is so powerful and can really shift my mood both positively and negatively. I do get times when I can't tolerate it though. My husband likes to listen to some pretty avant-garde stuff some days which I can't deal with.

At the moment I'm listening to a lot of funk and soul and rockabilly. Other bands/singers/djs that are special to me include Beck, Moby, Fatboy Slim, Beastie Boys, Jon Spencer Blues Explosion, Jurassic 5, Doves, Orbital, Parliament, Funakdelic, King Creosote, Daft Punk, Qotsa, The Black Keys, The Beta Band and a lot of newer Indie bands.  However my all time favourite band are Belle and Sebastian. And by concindence it wasn't until I started reading Just a Modern Rock Story  that I realised the lead singer Stuart Murdoch had been very unwell with ME while at university and had to take a good few years out. It was during this time that he wrote a lot of his songs. This interview talks a little about his experience of CFS. It appears that he is well nowadays or at least in control of his illness. I've posted you one of my favourites :) Does music play a part in your life? What tunes help you cope on your dark days?

What is recovery?

In the last few days, I've seen a few posts both on blogs and on facebook from people who have stated that they consider themselves to have recovered using a particular approach, which has been individual to them and some have felt unable to discuss the reasons behind their recovery. Here's another update on Martine McCutcheon who has shared some of the secrets behind her recovery.  I don't fully understand why people would want to keep it a secret and not help others... Anyway I've been thinking about what recovery is and how it seems to mean different things to different people.

For me eleven years on, I don't consider myself to be 'recovered'. To me being 'recovered' and 'well' is how I felt ten years and eleven months ago. Although I manage to work part time and look after a house (it doesn't resemble the glossy magazine pictures I aspire too though!) as well as looking after my boy and managing to do activities, I still suffer symptoms albeit mild. I'm aware that some schools of thought are that recovery doesn't always mean a return to pre-illness health especially if that lifestyle contributed to you becoming unwell but I would still like to be able to think that recovery could mean that I could still have the option of running a marathon if I wanted to?ha ha!

The question is what can help with recovery?  I've tried a few things over the years. Some more helpful than others and I plan to do another post about those later. Should I have done/be doing more to help myself get well?? A (short) graduated return to full time shift work a few months after getting sick was never going to help my recovery...  but in my defence I was beginning my longed for nursing career and had financial commitments. I was also in denial for a long time. I carried on trying to live the life I had been previously until somewhere along the line I began to accept what was wrong and alter my lifestyle and thought patterns.

Despite this I don't believe that changing your thoughts and taking an exclusively psychological approach to this illness will work (certainly not for me). When I can, relaxation and yoga definitely do make a difference to my fatigue levels and outlook but they are far from being a cure. Examples like the 'lightening process', 'mickel therapy' and 'reverse therapy' do seem to have worked for some sufferers but in addition to the lack of an evidence base for them, the costs involved are pretty significant. One approach I have been attracted to however is that taken by The Optimum Health Clinic. I have watched the DVD and follow them on facebook and I do believe that a holistic approach could offer some benefit. However until I win the lottery I will have to just make do with what the NHS is offering, which is graded exercise and cognitive behavioural therapy.

I could certainly do with letting go of a lot of the guilt and pressure I put on myself on a daily basis. I have to believe that it's not my fault and I am doing my best given the circumstances. Who knows, maybe it will be me telling you my recovery story some day....

Time to take heed

This week some of the dreaded ME/CFS symptoms have been returning;  twitching muscles, heavy feeling in my limbs, restless legs and the wrong words coming out or I've been getting words or letters mixed up when I talk. The latter is probably not so noticeable to others but it embarrasses and frustrates me although I'm at the stage now where I can laugh about it. What else can you do! I've also noticed that my thoughts are slipping into a more negative way of thinking, I've been a bit more irritable and my mood has dipped a bit. All warning signs for a relapse if I don't catch it quick enough.

Action Plan:

• plenty of sleep
• healthy diet - reduce sugar, caffeine and alcohol
• meditation at least once a day
• mindfulness during the day and gently challenging my thoughts 
• scaling back on the activities (never an easy one looking after an active four year old but good old mumsnet and netmums always have tips on activites to do indoors during Autumn). 

I'm not always sure what definitely causes these blips - do any ME sufferers??!! But I'm reckoning walking too far last weekend, the change in season, family stress (I wont get into that...) and maybe pushing it slightly at yoga this weekend have been the contributing factors. 

Always such an inconvenience when you think you are doing ok.... 

Wonky immune system

The last few days I've been doing a lot of reading about auto-immune conditions and how ME/CFS could be categorised as one.

Basically one school of thought is that ME/CFS sufferers have an overactive immune system and that's the reason we feel so tired, because our bodies are on red alert, constantly thinking that there is an invader that needs to be killed off. To me it makes a lot of sense. This is an article from a few years ago and the issues surrounding improvement in symptoms during pregnancy (the immune system is suppressed during pregnancy) , the role of stress in developing ME, as well as triggering a relapse and how an overactive immune system can cause a myriad of symptoms like inflammation, IBS, intolerances and allergies. Exercise boosts the immune system so its no wonder that this can be bad for us...

I have a cold at the moment and so my ME is pretty bad. One funny symptom I get when I have the cold or a virus, is itchiness all over; a bit like a creepy crawly, restless feeling. Again probably a histamine response triggered by a wonky immune system. I wont get into too much jargon but the mast cells are connected to the histamine response and are thought to play quite a big role in ME/CFS as discussed here. Its also encouraging to see the results of the Rituximab trial and the further trials that are likely to take place.

In terms of what helps me, I find it very difficult to have time to rest (something that's extremely important with this illness) but with a preschooler and house to look after, part time job and friends to keep up with (that's vital for my sanity ha ha!) , its difficult to make  'me' time. What does help though is 'activity switching'. I ensure that I am only doing something for a certain period of time i.e.watching tv or going on the laptop, which I call a 'brain' activity. I will switch after a while and do something like washing the dishes or emptying the washing machine, which is a 'physical' activity. As I said before I'm lucky to only be mildly affected so not being able to rest regularly on a daily basis is not such a big loss to me now, although I'm fairly sure it would help! Most nights that I come home from work I'm no use for anything except my bed!

I'm determined that I will recover fully though. Next month it will be 11 years since I first became unwell and although its been a slog, I have made a massive improvement with my health. Back in November 2002 I was stuck in my bed for weeks on end struggling to walk through to the bathroom for the dizziness and couldn't focus on people outside the window due to the blurred vision and floaters in my eyes. The exhaustion was unbearable and I cried lots especially when the GP dismissed it as a virus and told me I needed to get back to work... The headaches, GI symptoms, palpitations and muscle twitches worried me enough at times that I wasn't sure I would make it through the night. Thinking back it's like some awful nightmare and was a massive strain on my very new relationship. But I got through it (and stayed with my boyfriend - now husband!). Reading the books on recovery from ME/CFS and the stories online were and still are a big inspiration.

Here are some ideas to help you. Good luck!