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 🙂


The battle of thermoregulation


A battle everyone in Britain will be facing today but one that us MSers have pretty much every day.

“My body’s thermostat is broken”

It’s the easiest way I’ve found to try and explain to people why I overheat in a perfectly reasonably heated room or when they are all saying it’s cold. If they need more detail I’ll try and get them to understand that our already damaged nerves can’t cope with the temperature change just like a computer overheating and either crashing or slowing to a crawl. There’s lots of information around on it like the National MS Society and the MS Trust if you want to read up.

So me? I’ve never coped well with heat. Heat stroke, headaches and sunburn were staples of my childhood summers but now it’s a whole new ball game. Don’t get me wrong I still get heat stroke etc if I’m not careful, but along with the “normal” dangers of heat come the fun that is blurry vision, dizziness, extreme fatigue, sweating like a pig (no really I never sweated like this pre-MS), numbness, tingling, weakness and all the fun little symptoms I get when my MS is exacerbated.

As such over the past 8 years I’ve developed some interesting little techniques to keep myself cool. Most obvious, some odd, some I won’t torture you with a photo format of!

heat management

Fans, I love fans. If I could afford air conditioning I would but since I can’t, fans are a must (I realised too late my new car doesn’t have AC and I nearly cried getting in it today). The red tube is a spritzer bottle I found and it squirts just the right amount of water onto my face etc to make the most of a breeze from the fan and really helps cool me down. If you freeze large bottles of water and place them in front of the fans you make a sort of mini air conditioner as the air cools when it passes around the bottles too, I don’t have space in my freezer for that sort of thing though. You can buy relatively affordable air conditioner units and I’m soooo tempted right now but for such short periods of time I don’t know if it’s worth it for me.

Cold compresses whether a flannel or a gel icepack, the added bonus of the ice pack is it can go anywhere without drenching your clothes and I’ve even had them in bed before.

Cold shower, well not cold but cool and the effect if pretty temporary though wet hair is a bonus for a while.

Ice pops! I’m a big kid yes, but Icepops are a godsend on days like today (or any time I over heat so they are always in my freezer).

Obvious and I know you’ve heard it time and time again but drink plenty of fluids, lots of water, juice, tea (hahahah yeah right in this heat). I used to freeze the whole bottle of water but have found it’s better to freeze about a quarter of a bottle on an angle and then fill it up with water. It keeps it nice and cold for longer than in a glass with icecubes but easier to drink than a solidly frozen full bottle obviously.

So today I was introduced to the idea of a cooling pad for pets. Great idea (that Toby turns out not to be keen on) and a little light bulb went off.

“If it’s safe for my pooch to lie on it, then surely…..I could use one too!!”

So off I trotted to B&M bargains in my volcanic car that nearly made me melt, got a couple of pet cooling mats, a new fan and a whole load of other bits.IMAG2067

Got home, encouraged Toby to try it out though he soon went back to the hallway, then put one behind me and slumped on the sofa, Heaven! It warms up as things will when against a very warm body. I was sort of thankful Toby wasn’t keen because that way I could fold up mine, put it in the fridge and use his. Relay cooling mat usage, it’s the future 😉

I’ll be using it on my bed tonight along with the fan and the thin sheet and the lack of coverage in general 😛

These seem to be similar to the “Chillow” that’s available but thinner and cheaper. Looking at the Chillow it would probably stay cooler a little longer but not by much and it’s smaller than the pet mat so would cover less bed area. You can even get a pad for a single bed if you’re feeling extra flush money wise!

download (1)I’ve since heard about something called an ice towel which is on order from Amazon and should arrive tomorrow just as the thunderstorm breaks and the heat goes away haha but it’ll be there for the future.

Apparently it’s designed to be naturally cooler than the atmosphere and with a bit of added water wrung out it’s even cooler 🙂 It’s similar to the cooling scarves available in how it works by the looks of things and is to do with evaporating the water to cool you down.

If I had the money I’d invest in a fancy cooling vest, I’ve debated a few times making one for myself as they’re very expensive and I know how to sew so I’m sure I could come up with something to hold ice packs! but it’s figuring out how and what to make it from that’s always stopped me. They’ve been designed for firefighters, motorbike riders, the armed forces as well as those of us with medical conditions and come in a few main types.

Evaporative cooling vests are the most affordable, as they don’t really work that well in humid areas but they are light and easy to wear under clothing.

Phase change cooling vests on the other hand actually keeps you cool in a constant temperature of around 60degrees Fahrenheit. The problem with phase change cooling vests is that you will have to either recharge it after every three hours or use cold packs that you will have to freeze and then insert them.

Active cooling vests are very effective, but you can only use some models with a power pack, making them pretty bulky but they can last for a long time.


cchv_front_web_394_generalcooling vest industycooling vestStandardBasic_Front.jpg

From looking around they go from around £30 for the most basic up to a couple of hundred for the most complicated! Boy are they tempting on days like today.

So there you go from the bog standard techniques anyone can do at home, right up to the dream scenarios of technology making things easier.

Keep yourselves cool everyone however you manage it 🙂



It’s been a tough month, at the end of a tough year, the culmination of a tough decade. Tough is the only word I can think of to describe it, a word I say to people when they complain about things they can’t do anything about (including myself).

adjective: tough; comparative adjective: tougher; superlative adjective: toughest
  1. 1.
    (of a substance or object) strong enough to withstand adverse conditions or rough handling.
    “tough rucksacks for climbers”
  2. 2.
    able to endure hardship or pain.
    “she was as tough as old boots”
    • having the confidence and determination to cope in difficult situations.
      “he liked editors who were tough enough to make the grade”
    • difficult and requiring determination or effort.
      “we have six tough matches in a row”
    • used to express sympathy with someone in a difficult situation.
      “Poor kid. It’s tough on her”
  3. 3.
    demonstrating a strict and uncompromising approach.
    “police have been getting tough with drivers”
    • used to express a lack of sympathy with someone.
      “I feel the way I feel, and if you don’t like it, tough”


verb: tough; 3rd person present: toughs; gerund or present participle: toughing; past tense: toughed; past participle: toughed
  1. 1.
    endure a period of hardship or difficulty.

One thing has become clear  as I fight for my health, my mind, my ability to live a “normal” life. In order to do that you have to be”tough” and I’m not always sure that I am, today is one of those days.

How long can I be tough enough to fight this without becoming so tough I don’t let anyone or anything near me? I’m already on my way, I have pulled away from friends and family, become resigned to not having children, given up on the idea that I will find love. It’s a defence mechanism yes, but I know from experience that defence mechanisms can then become the problem.

granny starsI’m Granny Weatherwax, grumpy, alone, refusing help, stomping around in my big boots and I’m not ashamed to be like her. She cares about the world, the people in it and how things “should be”, yes when you first meet her in Terry Pratchett’s discworld she seems cold and unforgiving but look under that shell and you will see her heart. I hope that I’m the same and that people who matter see me rightly.

I was devastated in one of the last books Terry wrote when Esme passed away, changing her “I aten’t dead” card to “I is Probly dead” and prepared everything for her funeral (I’ll be doing this soon).

The world is slowly slipping into madness, I don’t have magic to help it but then most of the time the witches didn’t use it, they just made people see sense.


In the past I have suffered with paranoia about the world I live in and this week, even with medication that helps with it, I’m struggling.

How can I be in a world where an entire nightclub is shot up by idiots who have a problem with gay people?
How could a woman MP be killed, stabbed and shot a couple of miles from me in broad daylight?
People trying to attack women walking their dogs to hurt them and steal the animals for whatever reason.
Refugees still trying to escape from war torn countries being victimised and turned away by countries because of racism and religious persecution.
Then to top it all off my country is full of people so willing to believe lies and scaremongering about our continent that they voted to leave a community that was set up to foster positive relationships between countries.
Oh and not to forget the Prime minister quitting when he lost the fight leaving us leaderless and with a choice of nothing but idiots to replace him (yes he was an idiot but at least he was in charge).

eu4real_goodbye_eu_sad-700x350Now don’t get me wrong, I know the EU was faulty, it is being run badly by people we have no say in. But leaving it rather than trying to fix it from within, makes little sense. I wasn’t going to rant about the why’s and wherefores of the whole Brexit calamity and I won’t (I’m no economics or politics specialist), so let me leave it by saying I’m very scared by the whole thing.
This country is run by rich, overpaid, upper/middle class pompous idiots. The world is run by the same and the USA’s presidential elections coming up are another little bundle of “what the F**K!?”

I’m ready to give up on fighting, what’s the point in my buying a house that’s better suited to my declining health? Soon if our government gets it’s own way I won’t be able to afford health care anyway and I’ll end up plummeting down the MS rabbit hole faster than I have since I was diagnosed 9 years ago.

save-our-nhsWhat’s the point in trying to get my medication levelled out to balance the side effects against the benefits, if I won’t be able to afford them anyway?

I joked about it on Friday, but if this really happens and we leave the EU, what will Scotland do? More than half of my family is up there, will they leave Britain? Should I move up to be near them so I won’t need a passport to visit them in the future. There’s the added bonus that the politicians up there at least seem to understand the importance of keeping their population healthy; so have fought to keep their bit of the NHS running as it should and hopefully will keep doing it.

My response to all these questions for myself…..

“Tough! it’s the way your life is now swallow hard, get your head on straight and stop feeling sorry for yourself”

If anyone else says it to me I’d likely rip their head off, but I have to tell myself something like this and remind myself to keep fighting.

How much longer I can believe my own prompting to keep trying I don’t know. I had to quit my last job because I couldn’t physically cope and am now working with my family (which I don’t know if I can cope with mentally). My body is proving less tough than I want to admit though I keep trying to use mind over matter to make it so.

I need something, anything that will make this world seem less dark. If I send out a plea to the Universe in general I can hope something will show that there is light at the end of this ever growing sewage outlet that is the world.

Please? I’m sick of having to be tough!!

dear life

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.

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.



relapsing sucks

blurredcarsIt’s been a while since I had a proper relapse, one that put me out of action, stopped me driving, stopped me working.

Well that winning streak is over as of Christmas. It started innocuously enough as what I thought was an exacerbation of my old optic neuritis and weakening of my arms due to a UTI, the strips in my bathroom said I was right about that at least and the doctor put me straight onto antibiotics. That bit was following the traditional pattern, nothing new, nothing to panic about and nothing to do but call in sick to work and wait it out.

I had to accept lifts or take taxis over Christmas to get me where I needed to be which was annoying and not exactly great for my independent pride. But pride comes before the fall, so I’ve been trying to put that pride into a box until I need it again and ignore the gut wrenching feeling that comes with thinking I’ve failed myself and others.

Annoyingly, this exacerbation seems to have turned into a relapse. For one day last week I felt almost ok, well enough to drive the mile into town to collect a prescription and buy some wool. That evening I think I already knew I’d made a mistake.

So tired, so much pain in my arm and my vision took a nose dive.

What a way to start a new year, flash backs to 7 years ago when the MonSter first gained a proper foothold in my CNS and was diagnosed. Almost to the day actually and with Optic Neuritis yet again 8O.

Well my Neurologist wasn’t brilliantly helpful yesterday, simply telling me that I needed to go to my optician, get a full report and send it to him by fax. If he thinks the results are low enough then he will give me a prescription for steroids (I’m assuming it will have to be oral not IV and that I am not looking forward to as I had trouble with them before).

visual pathway
yes this looks complicated and confusing, but it’s just a basic diagram of how the visual field if affected by different areas of damage along the optic pathway. A diagram so ingrained in my memory that I diagnosed where the damage was in my first bout of Optic neuritis before the GP even thought there was anything seriously wrong.

The opticians at Boots near me were great, I got in this morning for a full work up. Pressure testing with that lovely machine that puffs air into your eyes, pictures taken of my retina, full visual field test then in to see and try to explain to the lovely optician lady what was going on and what I needed.

It was nice just to know I wasn’t imagining things, I was right that my vision had severely deteriorated since I was last in to get my eyes tested in October. I’m not going crazy in that respect at least! She even redid the visual field testing again in more depth to double check the results and see exactly what was going on before sending it all off in a fax to Dr Lily confirming that I was right about it being Optic Neuritis if a relatively mild case. Now it’s just a waiting game to see what he thinks is the best course of action.

What I found out today worries me more than my own vision though! The amount of vision I have at the moment is well within the limits for driving 😕 She said I shouldn’t be driving at night so daylight hours only and short journeys that I may need to do but even that will be pushing it for me. It means that there are people out there driving around without a second thought about it who see the world through a foggy mess as far as I’m concerned! OK so I had about 20/20 vision even after the damage the other bouts of optic neuritis had done, it may not have been perfect but I had good sight and any change will always come as a shock…but really? people go out and drive like this?? I have been too scared to get behind the wheel of my car at all this past month or so and still will be for a while I think.

But then anxiety does have its plus points as loath as I am to admit it. You won’t catch me driving when my body doesn’t feel right, I won’t be behind the wheel of a car when I don’t trust my own nervous system to work, there’s no way I would risk that.

So for now I’ve had to tell my new job that I’m off until it goes back to normal, they’re being good about it I’ll admit but still my head won’t allow me to accept it. What’s worse it having to try and tell the parents why I can’t work with their children for a few weeks, that is making me beat myself up so much that I dread going back. No way to tell how they’ll feel about me supporting their children once they know

An the results are in!

Those little lab monkeys have done their thing and all my results are back. Guess what! I have a chest infection, shocking really huh. The phlegm, coughing, blood and generally feeling crap wasn’t a dead give away then?

Not my chest but nothing like an x-ray to brighten the page


Unfortunately by the sounds of things (from the one side of the phone conversation I could hear at my GPs’ office) it’s not a cut and dry one. There was a patch that wasn’t inflating properly when they took the x-ray but it wasn’t as wide spread as they expect from a chest infection. The GP, a different one again, listened to my chest in a much more thorough way and found a quiet spot so she’s doled out the antibiotics. Here goes a week of popping tablets that will probably give me the squits, shoving my head over a bowl of steaming water and crossing my fingers.

The thing that was a little worrying was the fact the doctor said ‘..and if it’s not better in a couple of weeks we’ll send you off for another chest x-ray’ with a look on her face that was pensive. For someone who is a renowned hypochondriac that was not the best step that GP could have taken!

This was me on Monday when I started coughing up blood and was in agony from pulling a chest muscle (ever tried breathing with a pulled chest muscle??)

Ah well, I’ve started my bacteria killers and just need to remember that although when I am sitting still on the sofa everything seems okay (until the next coughing fit comes on) I am poorly. It’s so easy to forget when the pain killers are working! So easy to get up and think…’Oh that lawn really needs mowing, it’s dry now I’d better get it done’…and head on out in the garden only to find half way through getting the lawnmower out of the shed that I’m out of breath and in pain.

Do I give in?

HA! Of course not, that would be far too sensible.

My lawn is mowed now…I may be dizzy, hurting and still struggling to catch my breath but it’s done. I wish I could carry on and get some more cleaning or gardening done but my body is no longer co-operating.


You know what between the MS, the muscle pain that might be Fibromyalgia, the chest infection and the mood issues I sometimes feel rather trapped in my own body. The mind wants to do something but the body rebels, the body wants to do something but the mind rebels or best of all…the mind and body know they should be relaxing but the other bits of body are literally aching to get up and move!

I may not have DID but I certainly feel like I have a whole load of different parts of my arguing amongst themselves.

Luckily the post man delivered some presents packages today so I have different films to watch. I seem to have become a little obsessed with Batman recently and am working my way through every film made in the past couple of decades, I forgot how many of them have been made! I think I’m at a low point at the moment though with ‘Batman and Robin’, Arnie really spoils the whole thing to my mind.

I did get 101 Dalmatians the original cartoon through too though so I can sing along to that later if my chest lets me get enough breath to do it 😉

Right I think it’s time for a nap, since I’m having to sleep sitting up on the sofa I’m not managing to get a full nights sleep really so napping is more essential than ever in order to stop me becoming a zombie.


snip snip snip

I finally got up the guts to go into the hair dressers and book and appointment…I’ve not cut my hair for at least two years. It had become so long and so hard to wash with the pain in my arms that I finally decided it was time for a change

IMAG0558 My impression of cousin it was always fun …..IMAG0559

However when I got home last night it was by driving through heavy snow and this morning Toby and I woke up to the sight of 3 inches of snow in the garden.

IMAG0561   IMAG0562

I rang the salon…they had got there, just and I could still get my hair cut. Off I trudged dressed like I was going to the Arctic with butterflies in my tummy.

I chose a hair style from one of the magazines that matched what I had thought would look good and after chatting with hair dresser we began. She seemed to be trying to put me off it…but I really think it will be a good length for me to look after.

Then she did this….

IMAG0567Yes that is my pony tail…chopped off and given to me to keep as a memento of my long hair!

We chatted as she chopped, , moussed, styled, dried….and I’m not sure I was really ‘there’ as she did. But When I got home I looked in the mirror again and was happy to see ….

IMAG0564… This!

No more scragging it back in a pony tail for a while, no more hiding behind hair so long it touches my bum. It’s short, it will take effort and I can’t avoid washing it for days like I have done with the long version because my depression has lead to me not bothering to shower (yes I know it’s disgusting but it’s true).

I did it on a whim…but a whim that lasted a while so I trust it and hopefully I will stay happy with it when I have to style it myself and don’t have a nice hair dresser there to do it for me.

Ah well for now…I’m curling up in the living room watching the snow fall outside and trying to build up the energy to take Toby out to play in it. I haven’t done my latest module of the silly long distance learning course… haven’t been told off for it yet but I can’t make myself even start the damn thing. I’m wallowing in the pit and my hopes that having this bit of pampering would build me back up…well it hasn’t worked.

Depression sucks…sod it back to my crochet and to find something to eat for lunch.