Confessions of a hairless ME

Well it has been one week since I took the plunge and shaved all my hair off!

In the week leading up to the event people kept stopping me and asking if I was nervous - I was not. Then people seemed keen to come and watch, so I opened it up to have people around to watch.

On the morning of the event I was exhausted and more nervous about having an audience then I was having my hair shaved off!

Half way through the cutting my eldest daughter (6) disappeared upstairs, when it was finished and I went to find her she was in her bed crying and she wouldn't look at me. She said she didn't like my new hair. I told her to remember that I was still me and what I look like makes no difference to who I am. She did eventually appear back downstairs (with a little hot chocolate bribery), and after not very long was wanting to take me out and show me off to everyone!

My husband who is hairless had warned me that it would be cold, but I wasn't quite prepared for the sensation of having no hair!

It has been a cold rainy week here, so mostly when leaving the house I have been in a hat. Not because I don't want to show off my new hair, but because I'm not quite ready to get a cold wet head!

I have managed 1 or 2 school runs without the hat which have only met with positive comments.

But here are my 'confessions'.

I couldn't look in a mirror until Wednesday without thinking "wow that's strange, what did I do!"

I can't stop running my hands threw it - it is a lovely feeling.

It is surprisingly cold and I have spent much time in the house wearing a hat!

I am amazed at how quickly it grows!

It does look better than I had feared it might, though I don't love it as much as I had hoped!

It has taken away the irritation that I often feel with my hair, but has left me with a new irritation, but I am hoping that will pass as it grows a little.

All in all I am thrilled with how much money I have made for the ME Association, very pleased I have finally gone through with it, and haven't experienced any negativity only a couple of odd looks and double takes.

Sponsored Head shave

I was first diagnosed with ME when I was 16. I was lucky enough to spend most of my 20s in good health, but unfortunately nearly 3 years ago this awful illness struck me down again.

Very little was known about ME when I was 16, and not much more is known about it now. Despite being a chronic, uncurable, debilitating illness which effects thousands of people around the world there is very little research done.

When I was 16 ME was just coming out of its darkest days of being known as yuppie flu and being laughed off and was just beginning to be treated like the serious illness that it is. 14 years later and it still feels like it is just emerging. There are many people like me who are battling to raise awareness amongst everyday folk. Social media has made it much easier to inform the masses and get the word out. But a lot of GPs are still stuck in those dark ages, wanting to laugh it off and not treat it seriously. This is why so much more research is needed, to give the GPs something solid to hold onto.

Many sufferers experience sensory overload, we become hugely sensitive to light, sound, smell, touch. You will very rarely see me outside the house without my sun glasses, even on a dull day. Others have to wear ear defenders, steer clear of strong smells, busy places.

One of my sensitivities is touch. I can no longer stand to wear jewellery, i often need to wear big baggy clothes which don't restrict me at all, and my hair really irritates me. This is one of the reasons this seemed the perfect fundraising for me, shaving my hair off is something I threaten on most bad days and now I will be able to see what it would really be like and at the same time raise some much needed money and awareness for the ME Association.

I asked my 6 year old daughter how she felt about me shaving my hair off and her first response was "nervous", so I asked her why nervous, she said "nervous of what other people will think".

I was shocked that my 6 year old already has preconceptions of conforming and worrying what other people think, this gave me all the more drive to go ahead and show her that it really doesn't matter what you look like, or what other people think, you are you and that's all that matters.

So on September 12th my husband will be shaving my head for me - and I can't wait!

To sponsor me visit www.justgiving.com/joME

Or Text JOME85 £5 (or any amount) to 70070

"It's Real, it's Physical, it's ME"

Holiday ramblings

The end of this week sees the beginning of the summer holidays for my children. This brings with it a range of emotions, pride, relief, sadness, frustration.

My eldest will be going up to year 2 and excitedly started her new class this morning.

My youngest will be starting year R in September. I am so proud of how she has come on in the last year. She has gone from a shy girl who would barely say 2 words to a confident, never stops talking whirl wind! She is going to love school.

But it also sees the end to me being a stay at home mum. I should be getting excited about looking for a job, going back to work. But I can't. I can't begin to describe the sadness and frustration at not being well enough to work.
A few people reading this will be thinking "oh I wish I didn't have to work", "you're so lucky being able to stay at home". But believe me when I say I am not. It is lonely being at home when everyone else is at work or school. It is frustrating not being able to bring any money into the family.
I should be looking on the bright side, think about all the extra rest time I will get that will aid my recovery, but it is hard always looking for the good points.

Holidays in themselves are hard. When the kids were little I would dread the summer holidays. 6 weeks without our usual routine of toddler groups. Now I find relief in them. Yes I will have 2 stir crazy children to entertain for 6 weeks, but I won't have to leave the house twice a day 5 days a week so I really can spend all my spoons on them!

I did recently have 2 and a half weeks of feeling great. We went on a family holiday and we walked, swam, scooted, disco'd and even climbed a light house! I managed to keep the momentum going for a while after we got back which was great, made me realize what life should be like. But then life happened, and I crashed. But I will get back there again.

I'm also struggling a bit with social media at the moment. I used to say that being a part of these sites meant I could live vicariously through my friends and family, but recently I've been finding it hard seeing people doing things that I wish I could be doing. So if I am a little quiet it is because I am avoiding my timeline. I am still looking at notifications though and posting the odd thing.
This is good really because I spend far too much time on the computer which is not good for my pacing and I will have far less time to look during the holidays.

I'm sure I will be back to my happy smiley self again soon. In the meantime bear with me.

Sorry for the ramblings, clearing my head.

Different types of tired

Through having M.E. I have come to learn that there are different types of tired.

In everyday life;
There's the satisfyingly tired where you've been busy, exercised, achieved things and are then worn out by the end of the day.
Then there's the frustratingly ill tired where you can't move no matter how much you want to get up and do things you just can't.

When you add M.E. into the mix it gets trickier. For when you are satisfyingly tired through having done something, perhaps too much, you're body aches and the chances of actually being able to sleep well are greatly reduced.
Then when you are ill tired, although now perhaps able to sleep no amount of sleep will fix this state of tiredness.

On a slightly related note, I bumped into a friend yesterday who I know has been feeling under the weather lately so I asked how she was feeling. She was about to answer then stopped herself and said she really can't moan to me about it. I realise I have been particularly active in advertising my M.E. (With last week being M.E. awareness week), but I believe everyone has a right to moan if they are feeling rubbish no matter what the circumstance.

Everyone is fighting their own battles and your level of hardship is still hard to you even if it feels insignificant next to someone else's.

Some of my M.E. friends have it a lot worse than me, they struggle day to day with severe M.E. are housebound apart from hospital appointments, but still offer unconditional support to me and others with my level of the illness even though we are significantly healthier.

Having M.E. doesn't make you uncaring for others with minor ailments, if anything it has made me even more mindful of looking out for others feeling rough, and offering them my care and attention, probably because I know only too well how lonely it is to be ill.

"People will forget what you did, people will forget what you said, but people will never forget how you made them feel" - Maya Angelou

Fighting

Today I am feeling very sorry for myself. Having been hit on Monday by a 12 hour tummy bug I still feel horrible.

Last year I had a mild tummy bug and it set me back months on my recovery. So today is filled with uncertainty on top of the wobbliness and exhaustion from doing the smallest of things.

There have been tears every time I think about the coming weeks or even days. Trying to figure out how to make what is usually doable happen now that it is not.

I hate this struggle. But I will fight on and I will win.

But it is not all doom and gloom. My nearly 4 year old has done a lot to make me laugh today. My friends on Facebook have also done well at making me laugh - my world would be very lonely without my virtual family, some of course are real family, some I have never met but are just as supportive.

A very short post today, but I've been trying and failing to write something for a week now!

Anxiety

To me anxiety = a nervous, scared feeling, extensive worry.

That was until I started reading Matt Haigs 'Reasons to stay alive' which is his personal story of depression & anxiety.

The way he describes anxiety made it take on a whole new meaning to me and brought into light some of the odd symptoms I sometimes feel.

In the early days of this relapse it was suggested I be driven to the nearest town, escorted into the opticians for a second opinion then driven home again. I couldn't even comprehend the idea of doing this. A normal activity, but it filled me with dread so much that I insisted it was not necessary and it didn't happen. This I knew was anxiety, it was a very clear irrational fear.

There have been other times in the last 2 years that have been less clear but I can now see were probably also anxiety and not just random M.E. symptoms.

I recall trips into town where every time I walked into a shop I felt dizzy and like there was not enough air. 

On another occasion I had to walk to get my daughter from school as my trike had broken and the world seemed to spin with every step, I had a kind of tunnel vision, everything was a bit blurry.

Sometimes when collecting my daughter from school I stand in an alley in a que, I often feel claustrophobic standing there again like there's not enough air, I try to make small talk with whoever is standing near by as it helps take my mind off this strange feeling.

I've also realised recently that making plans makes me anxious. Gives me far too much time to think about the event.

I have just yesterday made plans to meet with a friend without the kids for a cuppa and a catch up in town at the end of the week. I am thrilled, it will be the first time I've done that in over 6 years. But with that excitement comes so much anxiety.

Will I be well enough to go, will I be able to hold a conversation without sounding stupid (adult conversation is something I lack). 

I sometimes think short notice or spontaneous plans would be better for me because then I don't have any time to worry.

A friend the other day said they were passing but didn't want to pop in unannounced. I said next time please do! If I have no notice of guests then I don't spend far too many spoons trying to make myself and my house presentable. I know people tell me not to tidy on their account, but if I know someone is coming then I do rush around, partly because I am anxious about them coming!

But it is important not to confuse my anxiousness about people coming round and about making plans to go out as a desire not to do these things. I do actually love being social, going out, catching up with people.

In the last year I have learnt that anxiety, excitement, emotion if not kept in check are just as exhausting on the body as walking, talking and eating. 

Pacing takes on a whole new significance when you add these into the equation. 

How do you pace your emotions & excitement? I think that might be a question for another day.

Health anxiety = Hypochondriac?

I've been wanting to go and see my doctor for a while. I've been putting it off a bit as I have been feeling so unwell and when I have felt up to it she hasn't been available.
Eventually made an appointment with a two week wait. Great, lots of time to prepare. So I make a list of all the symptoms that have been worrying me. Add to the list various supplement trials others I know of with m.e. are on and I'm all set to have my mind set at ease and possibly further investigations done.

Downside of having so much time to plan is the anxiety build up in anticipation of going at all. I don't go out much, and knowing I have to be in a set place at a set time and with it enough to achieve what I set out to achieve is rather daunting.

I've been feeling quite scared lately, scared that perhaps this time I won't get better and that I might get worse.

First thing she does is laugh at my long list and tell me that I should only ever make an appointment to discuss 1 or 2 symptoms.

After looking through my list she says she thinks I've developed "health anxiety", I think this is another way of calling me a hypochondriac. I thought I was being well prepared and informed, apparently not.

She then goes on to say that if anyone (without m.e. diagnosis) came in with my symptoms and they had 2 young children at home, she would say the symptoms were down to life with young children. But I don't see any other mums out there who don't leave the house except to deliver the kids to and from school and even sometimes struggle with that.
I don't see other mums who have to spend all weekend resting instead of enjoying their family and going on outings because otherwise they wouldn't be able to function for the following week.

She did say she wasn't dismissing my symptoms, though at the same time it sounded like that is exactly what she was doing.
She has agreed to send me for blood tests, but said she really didn't expect them to show anything.

I know I have a diagnosis of M.E. given to me 13 years ago, but I have spent 8 of those subsequent years in good health. When both my kids were small I was in good health, still very active, able to work and enjoy my kids.
I don't understand how they can be so relaxed about my symptoms now due to a diagnosis made so many years ago!

Sorry for the rant everyone, but I am feeling so frustrated and let down by the system today.