Mum's the Word

Another installment in 'M'e Journey'.... this time it's about my mum.... I'm getting somewhere in the format of how this book is going to be developed - thinking about it a great deal, away from the mac, I find for me, this is just as important a time.  

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I could write an entire book about my mum with regards to her role in my ill health, she was always there for me; a rock, a support and a barrier to the outside world.  Let me clear a few things up at the outset

1. Mum did not want me to stay at home with her (as people often thought)

2. She was not mollycoddling me (that word really began to annoy me)

3. This was not a hypochondriac's outburst that she was protecting. (Don't get me started on that one).

So if we start from this point you will begin to build a picture of her. 

In the very early stages we were finding out things together.  It was always me and her; a kind of extended couple to the existing household of mum, dad and I, and of course, Benjie the dog.  Mum knew from the word go that something was seriously wrong, this was not ‘just flu’ and she had to fight quite hard to be heard within the family because all the above three statements were beginning to fly around.

“She’ll be fine when she gets back to work”

“Have you thought about taking her to see a psychiatrist”

“Don’t do so much for her, let her do it herself”

Mum always accompanied me, as I couldn’t drive.  (Of course I could drive, passed my test when I was 17 but just couldn’t drive at this time.)  Dad was working, so it did end up that we two would be experiencing all the treatments and therapies, the tablets and the discussions together.  I’d need her there to help me to reflect the words back to me, because I would often be so wasted by the end of a consultation that my brain would switch off and she was able to feed things back to the me and family.  Quite a responsibility, I think.

She was a sponge, just like me, soaking up all the information we could find.  People would often contact us and tell us about their sister/brother, wife/father/husband who were ill with ME/CFS and we would always be on the end of the phone, sharing information and passing on leads to ‘help crack the case’.

She wasn’t that particularly well herself, with high blood pressure and just recovering from a hysterectomy and having to wear a calliper - she really was stoical and got me through day by day with her sense of humour, sense of fun and sense of ridiculousness.  She’d always phone me when she was out shopping, asking if I could think of anything else that we may need.  It was only years later, many, in fact, that she told me she phoned whilst she was out to check if I was ok, to hear my voice and to reassure herself that I wasn’t in a coma.  Now this was way before mobile phones so the good old phone in the supermarket, that has now been reserved for taxis, really did have a purpose.

The devotion from this woman was second to none; she was a true lioness when it came to protection.  No one could say a bad word or anything negative about me.  I see now how this may have impacted on the extended family.  My sister was newly married and had her first baby just at this early stage, so mum would often leave plates of food ready in the freezer for dad and me to defrost and heat while she went to London to help with my sister, probably a good opportunity for her to get some ‘time out’.  I only hope that this didn’t take away the joy of being a grandparent but from the look on her face now, twenty years on, the bond she has with her three granddaughters is a bond that no one cold break.

Mum is interwoven into the fabric of this healing journey because she accompanied me pretty much everywhere, especially in the very early years.

Relationships are paramount when you’re coping with ill health, I know this is taken as ‘yes, of course’ but whomever the main person is in your life, it’s soooooo important for the support to help you overcome what is thrown at you.  Through companionship, humour, determination, I realise that mum played a huge role in believing that I could heal my body, mind and spirit which was pretty new territory then.  But she supported me totally so that I could rediscover myself and become 100% healthy.  Ok, it took about 7 years in total, but she was there every step of the way.  Respect to my Mum and all mums out there.  

Counsellor number 2 - it's all about self image

There's no order in these ME tales - I'm actually writing about the counselling and therapists I visited over an 8 year time slot - what's coming out is what's near the surface.  Who knows what will be next but for now - we're still in the counselling/therapist mode.  I did see quite a number of counsellors over these 8 years - all helping to understand and deal with this health problem that I was learning about on a daily basis.  Was this 'all in the mind'? No it wasn't.  Absolutely not.   Was I depressed?  Well as a 21 year old young woman, I wasn't dancing from the roof tops about it - hell, I could not clamber up to those roof tops anyway.  No I wasn't depressed, I was doing my upmost to stay positive and find my way out of it.  I was seeking support.  It was something intuitively I knew I needed to do. I never went on anti-depressants even though I knew that this was the only thing left the GP could prescribe and that was really the only thing he could give me.  I didn't need them though.  So here continues the story of counsellor number 2.

About a year later things were no better, in fact they were much worse.  Through a year of inactivity and barely enough energy to have a shower and dry my hair, I had begun to pile on the pounds.  I had struggled with fluctuating weight throughout my teens and had finally felt at a stable weight before I became ill.  By the time I was first struck with flu at the start, I was in fact feeling pretty good about my self and my size – result!

So here I was being faced with an additional challenge of weight creeping on.  No more dance classes; no more gym visits, or even a simple walk with the dog – nada! Nothing!  And so little by little the size of me got to be a real problem.  As I couldn’t shop for clothes, I had to order them via catalogues.  That good old faithful Next Catalogue came in handy, but as time progressed and before size 18 became de rigeur, Next became too small.  Then I’d have to look elsewhere for clothes. 

I was having difficulty coping with this weight gain, so I decided to seek out a counsellor, someone who could help me come through this as I really didn’t want it to detract from the matter at hand – finding my way back to health.  Having visited a local holistic centre, I noticed a business card for a therapist who specialised in body image.

“That’s her”, I thought.

My first appointment was ok.  Good in fact.  First appointments are all about introducing yourself and getting to know one another.  It’s a time to explore whether you can work well together in therapy.  I knew this not by any great massive educational discovery, but that’s how it felt and I have always known and trusted my intuition. 

I explained my problem and gave her a brief run down on how I was feeling.  “OK”, she explained, “next week, we will concentrate on your perceptions of how you see yourself and how that may differ from the way others see you”.

“Great” I thought, “sounds like a plan”.

The following week I arrived – again these outings for me were big business. I couldn’t drive due to lack of coordination and vision, plus sudden fatigue or migraine, so my mum once again dropped me off and either waited for me or went to shop.  I must ask her about that – what did she do when she waited for me during an appointment?

Getting ready, what to wear, this all became a bit of an ordeal.  I always tried to make the most of myself.  I put some make up on so not to look too pasty and had my hair in a nice enough style.  Looking back at photographs, I can tell I looked ill.  Though, the amount of people that used to say to me “oh don’t you look well” would make me want to burst out crying.  It made me feel like a fraud.  Little did they know the heartache I felt when they said that to me. 

Back to the session and I’ll never forget it.  She made me lie down on the floor on a large piece of rolled out paper – wallpaper-lining paper, I think.  She had stuck two pieces together.  She then began to draw around me.  Here I was, feeling so terribly bad about my size and she’s drawing round me.  When we had finished she asked me to get up, sit down in the chair opposite and talk about how it felt to see this ‘representation’.

I was mortified.  Staring back at me was this humungous 'interpretation'.  How could I begin to see what was real when I’m looking at a shaky outline of a figure or should I say what looked like a sweet potato.  Had I been naked, yes, I get that, bra and knickers.  I’ve seen Gok do it on ‘how to look good naked’ and it worked because the client was in bra and knickers and he was showing the benefit of his ‘sucked in under garments' and how they can take so many inches off you.  But this was a sweet potato in a long Next cardigan and black bulky jeans.

I knew at that moment that there would be no more sessions.  Oh I cried when I left, I was so upset at this ‘representation’.  I was also upset at how the counsellor had thought this a ‘good thing’ to do in week 2.  Even then I realised this was not what I wanted.  I know now that in order to gain trust in a therapeutic relationship, those early sessions are crucial.

 Mum and I still talk of this effigy today.  We laugh now, but mum had to help me through that ridiculousness and clever woman as she was, she made me burn it, which we did together, holding one another, crying and laughing, realising that a new day was dawning.

Some people are so vulnerable when going through long-term health problems and it made me aware of just how you can get caught up in something or someone and not able to say no.  Lucky for me, I was able to say ‘no thanks, not for me’ after week 2, but that’s because I had the support behind me and I was also getting used to saying no by now. 

In hindsight, looking back, with experience, I realise what her intention was albeit a feeble intention - she was probably a very good therapist but it just didn’t work for me.  I was paying for this privately and the majority for health and healing work back then was private (now there is more availability on the NHS or via GP centres).  

I felt it best to nip it in the bud, putting it down to an AFLO,

“What’s an AFLO” I hear you say to yourself?

 It’s ‘another f*&^%g learning opportunity - thanks to Andrew for that acronym!

Talking it out in counselling

I realised about six months into the M.E. diagnosis that I needed to talk about all that was happening to me and how I was feeling. This was quite a leap before its time really.  Counselling was something that was normally hidden behind closed doors; would people think the family was failing in some way?  

For me, I knew this was not the case.  I recognised that I could not off-load to my mum because she was suffering in her own way.  She was watching her 20-year-old daughter in an extremely debilitating state.  I can’t quite remember how I came to seek a counsellor.  I don’t recall where I found the information or who told me about it?  I think it may have been the yellow pages!  I was really lucky to find COMPASS in Liverpool, a charitable trust that offers support and guidance by way of donation only and here I met Pam (*not her real name).  I didn’t tell anyone else in my family that I was going as I was embarrassed and I thought it would confirm to everyone that I was ‘not with it’.  Not what I needed.

Entry was by a discrete red door – almost like visiting a secret society.  A plain plaque outside to confirm you were at the right place.  Its funny how times have changed and counsellors advertise everywhere and are so much more open and accessible.

Every week mum would drop me off as I was too unwell to drive and I would sit there for 55 minutes, talking about how it felt to be at this young age of 20 and ill with M.E. 

Ill with M.E; it sounds so strange when I write it now 22 years on.  Those first few sessions really helped me enormously.  Here was a place I could cry and be angry about my situation with someone independent who was not judging me, my family or even the illness itself.  I realised I felt so alone and so very sad.  I just didn’t know what was happening to me.  It felt so odd, like I was observing myself being the ‘ill person’.  Those sessions used to tire me out and often I’d come home and go straight to sleep.  Mum would always be waiting for me outside, religiously, always there, watching my expression as I got in the car, not wanting to pry or be nosey.  She just asked ‘was that helpful?”  “Yes it was” I replied quietly. 

The sessions were a real blessing.  Here I could talk openly and express myself.  I was feeling so left out of the world.  Friends were travelling during their university holidays.  I’d hear stories of Inter-railing through Europe, trips to Australia, Camp America or staying on a kibbutz in Israel.  Other friends were getting engaged, finding wonderful new jobs - Living - basically.  I wasn’t living, I didn’t feel I was living at the time, I felt I was coping with living.  It did take a while to open up to Pam.  She always had a box of tissues at the ready – sometimes I used them, other times I didn’t need to.  I went to Compass for 6 months and eventually felt that I could leave knowing that my inner reserves were still in tact and at any time I could return. 

My first experience of counselling gave me an insight into the profession. Over the years, I would tap into more talking therapies with various counsellors and this really related to the different challenges I was facing.  I felt that talking was a great way to support me with all the thoughts flying round my mind.  The main one being ‘was I going to be ill for a long time?” I realised from all the reflecting, that I wasn’t going to let this thought dominate my mind.  I wanted to get better, to find out what was going on with me.  I wanted to remain positive. I didn’t want this to define me.   I was fighting the label.  Nobody really knew about ME, it was still a bit of a mystery and a great media opportunity to label it; they did, with ‘yuppie flu.’

Counselling was such a valuable tool, helping me overcome my headspace whilst suffering.  It’s something I would always recommend to anyone struggling with long term ill health, taking a step away from talking to family or your main carer and with someone very separate.  Little did I know then how it would have an impact on my later life and I would train in this field so that I too, could offer such support.    

Writing about M.E.

I've decided something this morning.  I woke at 5am, many flying thoughts in my brain.  One strong one was:-  "I must go back to writing my book about ME - it's time". 

22 years ago, when I was 20 (gulp, is it really that long ago), I became ill.  Flu.  That's what we thought it was, a really bad case of flu that turned up on christmas eve in 1988.  I was living and working away in Manchester and feeling so terribly ill, having no flatmate as she'd gone away, my mum came over to pick me up, pack a few things for me and take me home to Liverpool.  

Little did I know that I would never return.  Never return back to work, back to the flat, or back to life (well at least for 6 years). 

As you do, when you have flu, you sleep.  We're talking, proper flu here, not a cold where you struggle on.   I could not shift it - it was hanging around and the doc thought I had glandular fever, so I had a fair few tests which all came back negative.  (This is quite usual when being first diagnosed.).

It was only by the end of February that I was referred to see a consultant who diagnosed M.E.

"M what?"

"M.E.  It stands for myalgic encephalomyelitis, also knows as chronic fatigue syndrome".

That was really the beginning of the unfolding self healing journey.  I didn't know it right back then but that is exactly what I would embark upon.   Self healing.  I learnt very quickly that nothing within western medicine could help, there were no pills, no treatments (albeit some small rumblings of research and thoughts).  Just the unfortunate tag of 'yuppie flu'.  Oh goddess how that phrase hurt.

I have diaries that I wrote during this time which record how I was feeling, the treatments I had, mostly complementary, the weird and wonderful practitioners I met, not forgetting the personalities in my life that kept me going, ones who made me want to hide and the few who I wanted to award an oscar.

So at 5am I decided I'm going to continue with this writing which I started recently but have put on hold, it feels right now and through my blog I can post snapshots as I write.  It will hopefully keep me on track.

M.E lasted until I was about 28 although at 26 I was able to go to university to study an honours degree.  It wasn't until I was 30 that I really felt completely well.  

So 12 years on, I can honestly say that I walked the path and came out the other side.  I'm one of the lucky ones.