Thursday, 22 May 2014

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!?

Monday, 12 May 2014

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) 
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. 


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 

Monday, 5 May 2014

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?