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!