Keeping up appearances

 I was talking a to a friend today who is having Chemotherapy as part of a treatment for her MS. Knowing that she was going to lose her hair, a few weeks ago she had her hair cut short and donated her hair to the charity that makes wigs for children with cancer, a lovely thing to do. After getting used to her new short style, which really suits her, she is now at the stage that her hair is falling out and the next step is to shave the rest off. It got me thinking that the main thing people worry about when having Chemo is the hair loss and they feel self conscious and worried about how they look. Most people having Chemo shop for wigs and or hats before treatment. This of course does give them a bit of control over what is otherwise a very difficult treatment and something that is often done alongside having to get used to the shock of diagnosis too. As I said this friends donated her hair to be made into wigs for children, but maybe there could be a way of having people’s own hair made into a wig and make them feel more themselves.

Amy Dowden from Strictly come dancing is currently undergoing treatment for cancer and has shared videos of her shaving her hair off. On Saturday night she appeared on live TV without her wig, she looked amazing and I am sure she probably felt awful.

So why is our hair so important and why do we feel so ashamed of losing it? If you are having chemo it is often the only indication of the damage that Chemo does to the whole body, but it also shows what you are going through and people should be proud of what they are doing. Ironically the professional dancers on Strictly this week did a number where they were all wearing wigs as they danced to a Barbie theme. They all looked so different I couldn’t tell who most of them were. Changing hairstyle and colour is often something we do to make ourselves feel better or happier about ourselves and the amount of money spent on hair products is crazy.

Hair also often says something about our character or allows us to fit into a specific culture, eg skin heads, punks, goths etc, it becomes part of our style. Growing up in the 1970’s saw some wild hair styles and colours.

People do make assumptions about people related to hair styles and colours, eg skinheads are thugs, blonde’s are stupid, goths are weird. As a child I always had short hair and my hair was black, most people assumed I was a boy. I did grow my hair a couple of times, but much prefer it short. As my hair started to go grey I spent time and money on covering it up. I always found having my hair coloured so draining, but felt I had to do it regardless of this. Thankfully I have now accepted the grey, I might not like it as much, but it means I have more energy and money for more important things. Appearances are important and we all want to look our best, but we should not be ashamed of something that is natural and or out of our control.

It’s not just a female thing either, male hair products has become big business too. Many men are ashamed of going bald and or grey, especially if they are still relatively young. In the area where I live we have so many barbers shops and there always seems to be another one opening.

Why do we get so ashamed of how we look? As a wheelchair user and hearing aid wearer I am really bad for it. When I first had hearing aids I grew my hair over my ears to cover them, when actually it’s much more practical to have it cut around my ears. What is there to be ashamed of, I can’t hear without them and a lot of people don’t even notice that I am wearing them. People used to be very ashamed of needing glasses, now they are almost a fashion accessory. I only wear glasses for reading and it’s such a pain having to take them on and off all the time and I can never remember where I put them, but glasses now seem much more acceptable than other corrective aids. I hate people knowing I wear hearing aids and even with them my hearing is not great and I spend much of my time either avoiding contact with people or coming across a stupid rather than explaining that I cannot hear. I wonder if people with guide dogs feel ashamed, I do hope not.

None of us are very good at accepting things that make us stand out as being different. I use a wheelchair outside of the house and I hate the way people treat me because of it, I am not a lesser person and without it I wouldn’t be able to leave the house. I hate that I am reliant on someone to push me and feel sorry for my daughter and husband and often avoid going to things if it will make it awkward for them. I think perhaps some of the shame comes from feeling that I am not justified in using it, I am not paralysed, I just can’t walk far. I do feel like a fraud when I get out of my chair to do something or use a blue badge parking bay, even though I have a blue badge.

As someone who has an illness that imposes a lot of limitations on me, I still feel so ashamed that I don’t work and I don’t do much cooking or cleaning. I hate asking for help and am ashamed that people have to do the daily chores for me. It makes me feel a lesser person and an unworthy person. I can’t accept that it is not my fault, I always feel it is my fault and I should try harder and do more so then this piles upon my physical limitations and adds to the exhaustion and means I can do even less. I always think that people think I am lazy and spoilt because I don’t work. I also feel that if I had another sort of illness it would be more justified, but with ME, you feel so ill, but nothing much shows up medically so you feel such a fraud. I often wonder how I can feel so unwell and have so little energy when apparently there is nothing wrong with me.

I am currently feeling so useless as I am supposed to be making stuff for a hedgehog recue charity to sell, but I never manage much and other people are so productive, it puts me to shame. The lady who runs the rescue is badly sight impaired and has multiple health issues, she is also foster Mum to disabled children and she work relentlessly. I do want to be able to help so much more and am ashamed of how little I get done.

We all put so much pressure on ourselves to keep up appearances and to appear normal. What is normal anyway?

Thank you ME

Before I begin I want to say sorry to the many of you for which this would have been impossible and I hope I haven't caused any upset, I know I often get upset when I read about what others are able to do and know that I couldn't even consider doing.

This is unusual for me, but I want to say thank you to my ME for allowing me to survive last week when we risked a 5 day trip to London.  It was an organised trip and amazing value and meant we could visit places that we would never manage on our own.  Also being a coach trip meant that Rob didn't have to drive so theoretically it was better for him.  Unfortunately due to his own health issues he did get ill on the first night and and struggled for a couple of days, but we avoided a medical emergency this time.  What a pair we are.

Any trip for us takes a lot of planning and wondering how we will manage, so we tend to stay close to home or places where we  can easily get help.  We knew this trip would be hectic and I wasn't sure if I would manage all the days out.  I had planned to miss one of them, but due to uncertainty about Rob I ended up going.  If I had stayed at hotel I would have been stuck in the room as it was to far to even walk to reception or get outside.

I still don't know how I got through the trip especially with the added stress and consequences of Rob being ill.   In part I got by on adrenaline, sleeping tablets, extra food, pain killers and sheer bloody mindedness. Taking the sleeping tablets meant that I was settled at night, since I got back I haven't slept due to the adrenaline still raging and the day to day worries being back.  For short periods the adrenaline gets me by and enables me to do things not normally possible, but then it becomes a nuisance and is no longer helpful, so it's best to avoid if possible as the effects are detrimental.  Normally anyone one of the days would have really wiped me out as they were busy and overwhelming.  At the same time though I wasn't trying to do my daily routine as well, no meals to think about, no stairs to climb, no walking around the house, used wheelchair all the time even in hotel.  there were no loads of washing to put in or things to tidy up or making sure we didn't run out of milk or cat food (no cat to feed either!)  Travelling by coach, although it was noisy and I had to entertain Emily, was less stressful as you are above the traffic and not so aware of the speed and other vehicles or watching where you are going.  All the kids on the coach were well behaved, the only thing that got me was the one one-upmanship of who could spend the most or who had the best job.  Using a wheelchair of course makes you stand out and be looked down on, but thankfully the driver was helpful with getting wheelchair on and off it also gets you a few short cuts in some places like the London Eye, but not at Chessington who want you to prove that you need to be in a wheelchair (not sure how you do this and we weren't told about it until we tried to get on the safari ride and were told to go away).

Although I was there I still felt like I missed out and couldn't do things like everyone else or play with my daughter or hold her hand.  The first day was hard as she hates me being in the wheelchair and really protests that she can't walk etc or things are too hard.  I also realised that I didn't notice a lot of stuff around me, just focussed on one little bit at a time rather than the bigger picture, it would have been too overwhelming otherwise.  With Rob being unwell too we didn't push ourselves as much as we might have done and kept stopping for drinks and a sit down (for them)  and he slept on the coach most of the time.  In some places it felt like we spent a lot of time finding our way to things and then not appreciating them when we got there and moving on to the next thing.  Kids are also impatient and always want to be doing something, or sitting down saying they can't walk another step only minutes later to be running round a playground or something.

On the final day we met up with a friend who also has ME and her family.  We haven't seen them for 9 years, I was pregnant with Emily last time so they had never met her.  My friend was using the meet up to use a wheelchair for the first time and she soon discovered that although it does save energy it's not the easy option, it is uncomfortable, you can't see things and you still feel rubbish at the end of the day, but it means you can be present and her kids enjoyed the novelty.  I get sick of it, but know I need it and I literally can't walk far anyway and despite more than 10 years using it I still don't like it, but I guess I am not meant to like it.  Emily hates it too and yet she has never known any different.  I am small, but hate being at a level with everyone's bums, elbows and bags and seemingly invisible too, you also get al the bags, coats, drinks, shopping, camera's etc piled on top of you, so you can't stand up even if you want to.  I hate not having any say in where I go or what I see and not being able to talk to the person pushing me, it gets very frustrating. The advantages being sometimes able to jump queues, not having to queue for the toilet (sometimes) and many places it's free parking for blue badge holders (not relevant of this trip) and I won't bore you with my rant about benefits changes and losing blue badge and motability entitlements.

I still don't quite know how we survived and I have felt ill since I got back, but whilst away I felt numb really, not ill, not well, just nothing, kind of unaware of my body really, quite strange.  I did feel ill at the end of each day and in pain and tired and was in bed early with my sleeping tablets.  On the way home I really struggled with pain and by the time we got back my hands and feet were literally numb and I didn't know what to do with myself.  I collapsed in bed, but didn't get any sleep and still haven't slept properly.  I will never, never understand this stupid illness the more worn out I am the less I can sleep, it's torture.  After a few days away from home and doing different things which was extremely tiring, I am now back at home and back to using my energy for day to day routine and unable to do fun things or get out, whilst everyone else can do what they want and go off without me, post holiday blues and payback and motion sickness from travelling.  Emily gets to do nice things with other people but not with me.

Whilst we were away Emily was watching TV and an advert for Senokot  came on.  She said to me , you should get some of those Mummy. I asked her why she thought that, her reply "well it says if you take one at night you will be normal by morning, they could really help you" Bless if only it was that simple!

I will finish with a few pictures and a firm resolution not to do this again in a hurry!

frown emo