I mentioned I’d ordered…

….an ice towel among other things in my post the other day.

So here’s a little something to review it. I was wrong that it would arrive after the thunderstorms because I’m horrified to say there’s not been a drop of rain just muggy heat with the occasional bit of promising cloud that never comes to fruition.

Now most people I spoke to had dampened it and wrapped it around their neck. That is lovely but I found it was warming up very quickly and I was faffing with it constantly as it wasn’t comfortable. So in a moment of inspiration I decided to wrap it around my head like a headscarf and Bingo! it stayed nice and cool for a while, I didn’t need to mess about with it and with my misting spray to occasionally renew the moisture I’ve now decided this is my way to use it. I love this towel and will probably invest in a second for when this one is in the wash as have most of the other ladies I’ve spoken to who have tried it out.

Are you ready for the embarrassing head shot? pardon the bags under my eyes, bad skin and treble chin but at least I wasn’t bright red thanks to the ice towels cooling properties!13738124_10154269858919484_5378851026048618046_o

In discussions on the women with MS group on Facebook there’s a few other cooling ideas that have cropped up so I may bore you with more about it at some point. Till then I hope you’re enjoying your weekends, I’ve got to go and prepare my house for a furry invasion tomorrow by the name of Angus 🙂

World MS Awareness day

Didn’t hear about it? I’m not surprised.

So how can I write this without sounding like I’m teaching a class or lecturing you. I’ll have to put some of the basics on but I think I’ll try and tell you what MS means to me.neuron

MS or Multiple sclerosis is a chronic, degenerative, neurological disorder. In other words it affects the nervous system, it steadily gets worse, it never goes away and there’s no cure. It’s one of the many “invisible illnesses” that anyone can be afflicted with, you could walk past someone in the street or even work with them and not have a clue they have it.
multiple-sclerosis-s2-definition

In simple terms for someone who has MS, their immune system is attacking the coating of their nerves for reasons that scientists are yet to clearly define. If you think of the nervous system as electrical wiring and the myelin coating like the plastic coating of electrical wires. When the myelin is destroyed on our nerves, the signals no longer get through properly if at all, just like when an electrical wire is stripped it shorts out the circuit.cns diagram

Since the nervous system controls pretty much all of the body this means that someone with MS can have symptoms ranging from loss of sensation and pain to losing control of the muscles anywhere in the body. Along with these we can be affected by memory or emotional problems and something we tend to refer to as “brain fog” where concentrating on even the simplest task is nigh impossible. I’ve got to mention the unmentionable and tell you that yes MS affects the bladder and bowels as well as sexual function but don’t worry I’ll leave it at that 😉

There are three main types Relapsing Remitting MS where you have relapses where the damage and symptoms are worse then remissions where things calm down again, if not go back completely to how they were. Secondary Progressive MS and Primary Progressive MS are both forms where there is a general deterioration of ability with less distinct points where the damage is happening.
Science lesson over for now, I promised to make this more personal.

My life was changed forever by this disease back in 2007 when I began struggling with my balance and nausea, a year later and I began losing my vision.

I’ve never been so scared as when I began to lose my vision.

The GP I had at the time was useless, even though the opthalmologist recommended I see a neurologist and I knew from the pattern of my vision loss that the problem was close to my occipital lobe, he tried to palm me off with “wait and see”. £150 trip to a neurologist privately proved me right and luckily the neurologist worked for the NHS too so put me straight onto his books and transferred me over to begin the journey to find out what was happening.

I could walk you through my whole journey but I think it would bore you, so suffice to say 3 relapses in 6 months, 2 neurologists, 1 MRI scan, 2 Lumbar punctures, 2 weeks of high dose IV steroids later and I got diagnosed with Multiple Sclerosis. I was given a choice of disease modifying drugs, taught to self inject and began a regimen of thrice weekly injections.

Have you ever heard that ignorance is bliss? Well I can vouch for knowing too much being hell. I had studied the nervous system at university, an irony that I can look back on and admire now, but this meant I had studied the worst case scenarios of a multitude of Neurological disorders including MS. I knew enough to be terrified of what might happen, but not enough to know that those “worst cases” did not necessarily include me.

So lets get past the point where I panicked and quit teaching, where I was ready to give up on life completely, to when I accepted this was going to be a part of my life but that I still had a lot to offer and was determined to keep doing what I could for as long as I could.

MS is a horrible thing to live with, but we CAN live with it. I’m nearly a decade down the line from the first major symptoms I exhibited. Yes over the years I have been slowly introduced to taking enough tablets to make me rattle on a daily basis but they keep me moving and control some of the more unbearable symptoms.toby
I can still walk, if slowly, not too far and with a stick. I will keep walking as long as I can! My dog and I still enjoy a constitutional to meet some furry friends and get some fresh air.

I can still see even if I have to admit it’s nowhere near 20/20 and sometimes when I’m tired too foggy to drive so I have to be sensible.

squares and pouchesI can still use my arms, though they’re weaker than they were and my hands tend to be clumsy. But I can still type, cook, crochet and knit which I do for myself as well as making things for charity which makes me happy and feel like I’m doing something good for the world.

I can still talk and those people who know me will vouch that I do at every opportunity! Yes I struggle to find the words sometimes and I stumble, stutter and get confused but I still do it. I have never been an operatic singer but I still sing to myself in the car and my kitchen, apparently it’s good for helping keep the throat muscles working so a great excuse to belt out some tunes.

My mind is still my own, I can think, solve problems and a lot of random information is still at my disposal. I struggle to retain new information like names etc. but I keep trying, I still enjoy reading, watching programs, learning things I can bore people with. I may become confused when I’m tired or stressed but I’m determined to keep exercising my mind and not lose it.

In other words I’m still ME. Daft, annoying, needy and geeky me.

MS has changed my world in so many ways, I’m not where I imagined I would be in a million years and I do sometimes still wish that plan had worked out but really who can say that their life is exactly how they expected it to be 10 years ago.

The one thing I would ask of the world is understanding, for people to at least have a passing knowledge of what MS is just like depression, anxiety, autism, diabetes, parkinsons disease, motor neuron disease, epilepsy and all the other invisible illnesses that people cope with day in and day out.

One day all people with MS hope that there will be a cure and a way to repair the damage that has been done, until then we will keep plodding on and keep trying to live as best we can.

 

 

Exacerbation…how I loathe thee

The definition of Exacerbation: A worsening. In medicine, exacerbation may refer to an increase in the severity of a disease or its signs and symptoms. For example, an exacerbation of asthma might occur as a serious effect of air pollution, leading to shortness of breath.

Until I was diagnosed I had used this word a handful of times. It had no real meaning in my life.

Once diagnosed with MS however it became an all too familiar concept, one that was to be dreaded, avoided if at all possible and when it happened….panic.

Usually my MS flares up or exacerbates when I get an infection or am run down through over doing things or stress. The first question asked by most MS nurses when you call up about a possible relapse will be do you have an infection? Have you been tested for a UTI? and when this exacerbation began I made a little drawing (I was going to base it on a scene from Shaun of the dead where they talk about exacerbating things but I got off track)

exacerbation

It’s not the best or most scientific explanation ever, but it kept me amused for an hour making it and it does give the general idea.

Time to go and take out my thrice weekly injection that tries to control this idiotic immune system of mine. According to the Neurologist I saw for my Bi-annual check in today it’s working pretty well, not that he ever sees with his test, the deterioration I feel happening slowly. I wish I was somewhere where I would get an MRI every so often that could show empirically what damage has been/is being done but unfortunately not.

Crossing my fingers this silly exacerbation goes away soon I can’t cope with the fatigue, spasms, vision problems that have come with it.

I told her

I told my Mother how much she terrified me when I was younger, that there are still moments when she’s angry that she scares me.

scared child

The look of disbelief on her face said it all to me. That a woman who prides herself in taking care of children didn’t recognise her influence on her own children and those around her.

Yes I spent my childhood hiding from that anger, that rage that escaped whenever I did something wrong, it’s why I’m so good at spotting “dangerous” emotions in others. No, when I couldn’t look her in the eyes it was not that I was being disrespectful, it was that I was terrified to lift my head and if I looked in her eyes I would shake. I still do when in a high pressure situation where I feel obliged to look people in the eyes, my body quivers and I can’t control it.

scared chils

So I remember only being hit by her twice, that does not mean the relationship was good. Did she not realise that when I couldn’t come to her with my problems? when I acted out as a child by stealing sweets from the local shop (the dog dobbed me in) the fact I wrote to a magazine (and got the answer back in the post which they found out) for answers I should have been able to go to my mother for. They didn’t know that I tried to run away as a small child, I packed a bag with teddys and books, but only made it 50 metres down the road before a farmer spotted me and made me walk back beside his tractor to our house (yes I lived in that sort of village).

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That I was sick from the amount of alcohol I consumed, at home, alone, before they got back from work more than once. Anyone who has had someone do that near them will know the difference and spot it, but not my family until I was passed out in it on my bed.

She’s surprised at the fact my sisters children want to be close to her, now I may not like my sister but there’s nothing shocking to me that she’s trying to not be our mother. I don’t know what she’s like with them in general because I do not see them unless it’s a family gathering but I don’t see fear in them when they approach her.

I know how to calm her in general now, she knows I speak sense, I can often talk her down when I know she’s in the wrong. But it will not be my life, my duty to do that. I almost feel it should be, that I should be there to stop her showing that rage to others, to protect them from it and her from herself but I will not, for the sake of my own sanity what’s left of it.

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Not up to human contact

As anyone who knows me on facebook can attest to recently, I’ve been avoiding human contact of the electronic variety as it was messing with my head a little. On top of work it was too much.

But in lieu of my writing a post, of me torturing you with my whingeing rambling I thought I’d post a video. It spoke to me (as so many of Tim Minchins songs do)

Looking back to know how to go forwards

Maybe it’s something that comes with getting older but I’ve become intrigued with my family history. I never heard many stories about my Dads side other than the bare minimum, for example I knew that my Grandfather was involved in WWII he taught dispatch riders how to repair and ride their bikes. I only found out most of the facts that I do know once my grandparents had passed away, they had all gone by the time I was 12 years old so I had not reached the point of wanting to know where I had come from by the time they had all gone.

I tell my Dad that he should write down his memories before he forgets them completely or he is gone and those stories are gone forever, adding to him that I wish he had told me those stories about his childhood when I was younger rather than repeating the same old stale stories time and time again then I might have shown more interest! Anyway…I’ll get to the point, I’ve realised that my memory is not good and I should really write down the little tales he does spin, when he tells me them, as boring or mundane as he thinks they are.

Today we were discussing his childhood, I mentioned that I had been looking at pictures of the area he grew up in after reading a blog post by another writer about the area he grew up in. It set off his memories and as sparse as they are they linen housesmade me smile, made me sad, gave me a connection to his past that I’ve not had for some time.

My dad grew up in Northern Ireland, a post WWII baby boom child with three older brothers. The family owned and ran a linen bleaching Mill that is actually documented in a book about the Linen Houses of the Bann Valley (scary to think that I come from such stock as common as I am living on a council estate). I never hear many memories from my dad about he and his family from that time so the little stories tend to stick.

As young children my Dad and his one brother that was still at home by the time he remembers, would play at the mill watching the linen being laid out on the green meadows to dry in the sun. They would run around the mill playing around the machines and probably pestering the workers in the same way that I did with anyone who came to the house when I was a child.

Older than my dad but the same sight he would have seen on a regular basis
Older than my dad but the same sight he would have seen on a regular basis

They would get the men who were piling up the rolls of dried linen to help them make forts out of the rolls, creating the biggest temporary fort any child could want. With gaps to use as doors and windows they would play in it until the rolls were collected to be taken to another factory, pretending to be soldiers and such as the factory worked around themFormer_Cowdy's_mill,_Banbridge_-_geograph.org.uk_-_260516

The Mill has seen much better days now and I'd be surprised if it's still even in this good a shape
The Mill has seen much better days now and I’d be surprised if it’s still even in this good a shape

While looking into the family tree I found a document that even my dad didn’t know existed. It’s a ships boarding record showing my Grandmother, Dad and uncle all going to South Africa back in the 1950’s to visit my Grandmothers family. I’ve found quite a few od them now and will be willing to pay the websites annoying fee (I’ve gone past the free period now) to print them off so he can see them. It saddens me that those boarding lists show that my Grandmother would take her younger children with her to visit the family in South Africa, leaving the older children at their boarding school and my Grandfather to run the business (or so I assume).

Leaving for months at a time due to the journey length on a boat, separating the family that was already emotionally distanced from each other. She trained as a home economics teacher so surely she must have know that the relationships that children have when young are important? I guess that unfortunately at this point in history it was seen as more important for young boys to be strong, to be trained to be independent and able to cope with the horrors that their parents had lived through. Discipline was everything and caring, loving them would always come second if not last.

What shouldn’t have surprised me was how few memories my Dad has of his grandparents. They lived in a house down the road from them but the only thing my Dad could tell me today about his Grandfather was that they used to see him on a Sunday on the way to church, where he would give them a mint imperial. His Grandmother even lived with them after her husband died but he couldn’t tell me much about her at all, the true legacy of an upper middle class family, no warmth, no connection between the people who are supposed to be bonded by blood.

I heard so many times in my childhood that ‘Blood is thicker than water’, that family is important and you ‘Should’ do this and ‘Should’ do that….I have now accepted that what my old therapist said is true…’Should’ is a bad word for me, it’s one of the reasons why I feel so appallingly guilty for so many little things. I try not to use it in my vocabulary too much now but it’s damn hard.

This whole ‘family’ thing confuses me a lot and always has done, especially since my fathers side classes people as cousins and ‘close’ family who I’ve never seen, barely talked to or in most peoples eyes would not really be part of their family. Third cousins, second cousins twice removed….in other words so far away in the blood line that marrying them would be completely legal and not result in deformed offspring, people I shouldn’t care about at all.

The digging into the past will continue, my Grandmothers side is intriguing and a post may follow about hers but more and more I realise my parents have improved on what theirs did to them, it’s just that they didn’t improve enough to avoid my emotional struggles.

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I turned 30…yeah big deal

Last year I turned 30, now my friends and people I know seemed to make a big fuss out of this when they did and tried to do the same to me. They didn’t quite get that I really don’t give a monkeys about my birthdays. I like a card, I like cake, but that’s about it! Long story short, my birthday is in the middle of the school holidays so I never really had the whole fuss at school, people often turned down party invites because they were away on holiday…I learnt not to expect an awful lot and now hate having to make a fuss about myself so why bother.

In the clear out I’ve been having of my house this past couple of weeks, I found my pile of 30th birthday cards and the version my sister and family had done for me. It was genius and made me smile so as much as I can’t stand the woman I will admit that it was a damn fine piece of thinking. If you want to smile, ignore my notes, ignore the ending of this post and smile away I won’t judge you or be upset 😉

Here’s what they did….

30th birthday c 30th bir

and yes they were right, I would like to be younger again. But with the knowledge I have of how things should be and how to stand up for myself (and preferably with a better big sister) so that I don’t end up this messed up!

30th birt30th birthday

I wouldn’t say that but I’m sure there were times when it was fun even if I don’t remember many of them. Plus when I was little I didn’t know any better, I didn’t know that my family life was not the idyllic scene that we all wish for.

30th b 30th birth

Yes I probably would have been offended if they’d got it a year or two out, but that much difference I think I would have got it…..I assume that this was just to fill a card and explain their intelligent comedy.

30th bi 30th

Woohoo! they got the maths right.

and with the cards I got a couple of silly things including a coke bottle with my name on it…not a full coke bottle, an empty one. Yeah, that’s what they think if me. OK so apparently the kids had insisted on sending it to me, but really? could they not have sent a full one and bought another one to drink? Bah

So if you ignore the background history of my sister and I, it’s a lovely gesture! It’s funny and shows affection but whenever a post about sisters comes up on facebook, an advert comes onto the telly saying about sisters or siblings and how important they are I sit and swear at it! I scream in my head “no they’re F&*$*&%g not! I wish I’d never known mine!!”

My family to a Tee. Abuse each other, ignore each other, treat each other like crap, but when it’s a birthday or Christmas then a polite card, a note and an obligatory gift to pretend that the rest of it was all BS.