The battle of thermoregulation

It’s that time of year again so thought I’d reblog it



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…

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The Monster arrives….


Today is World MS Awareness day and I thought today was as good a day as any to broach the subject on here.

I have mentioned before that I have Multiple Sclerosis, it’s a neurological condition that affects the central nervous system (the brain and spinal cord). It can affect anything controlled by them (anything from vision to coordination to bladder and bowel control) and tends to worsen whenever it feels like making it very unpredictable and extremely frustrating. Many people that I have spoken to over the years have dubbed it ‘The Monster’ and I agree with the

As far as I know my MS started in 2008, possibly instigated through stress as I was having my life made a living hell by my mentor of the time. I went into work and fell over on the floor when I turned round to speak to someone, my balance had…

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Sensory processing issues?

I’ve been told by some and wondered myself about getting tested for being on the Autistic spectrum. It would explain quite a lot but I’m torn as to whether there was any point in going through the stress.

Recently due to something at work (Educational Health Care Plans related) I had a sudden memory flash and realisation. Have you heard of “Sensory Seekers”? it’s a term that anyone who works with or knows someone on the spectrum may have heard but many won’t. It is what it says, someone who seeks out sensory experiences and goes hand in hand with “sensory avoidance” to culminate into a “Sensory Processing Disorder”.

“Isn’t that everyone? Everyone will avoid things they don’t like and do things that feel good” I hear you say, well yes we all look for sensations and avoid others, but it tends to refer to a certain way of going about it. along with the Autism Research Institute tells us

“In general, dysfunction within these [systems] manifests itself in many ways. A child may be over- or under-responsive to sensory input; activity level may be either unusually high or unusually low; a child may be in constant motion or fatigue easily. In addition, some children may fluctuate between these extremes. Gross and/or fine motor coordination problems are also common when these three systems are dysfunctional and may result in speech/language delays and in academic under-achievement. Behaviorally, the child may become impulsive, easily distractible, and show a general lack of planning. Some children may also have difficulty adjusting to new situations and may react with frustration, aggression, or withdrawal.”

Doesn’t sound like me? well this does tend to make us think of the most extreme versions of the spectrum. Children and adults who can’t communicate, sit rocking constantly, can’t cope with any changes at all….but this condition is a spectrum and after seeing many variations over the past few years I do wonder.

Anyway back to the memories that triggered this train of thought again. I have very patchy memories of childhood and they tend to only come to the front when triggered (rarely in a good way). Many of them were of playing alone in the back garden, it was large and with plenty for me to do but I admit I look back and I feel sorry for that little girl sometimes.

We had a climbing frame similar to this one in the garden and I was pretty good at the monkey bars back then 😀 I would spend hours climbing around on it getting to the top and sitting, standing and swinging there before jumping from the top straight down onto the grass (about 2 metres or so). If someone was around I would shout to them to watch and laugh at their surprise that I hadn’t broken a bone.


I’d climb the willow tree in out back garden and do the same, jumping from one of the branches and moving higher each time to see how high I dared jump from. I was always up in trees, there was something so soothing about being up high and more than once I wished I could live in one.

Jumping wasn’t reserved for trees and I’d jump down the stairs trying to get as high as I could and still land. Slide down the rail at every opportunity and climb around the ledge that overhung the hallway. I’ll see if I can find/take a picture of it because it’s hard to understand just how high and dangerous this was until you see it.

I’d do front flips from the chairs in our front room onto a pile of cushions, over and over again. Once I landed badly, bending my neck forward and I couldn’t breathe. My mum rushed me to the doctors and they decided I had probably slipped a disc which had popped back in….lucky as I could have paralysed myself. That didn’t stop me, I just made the pile of cushions bigger.

I was obsessed with swinging whether on the swing, from the banister rails, on a metal pole like a gymnasts bar a friend of the family made us. To this day if I’m truly in pain, can’t sleep, or upset I rock myself backwards and forwards with my head in my hands. In the days when I was still flexible I could lie on my front and pull my legs over to hold them by my head, I’d rock like this watching tv.

The hall in our house was long, at least 8 metres and I would run or skate backwards and forwards until I was told to stop. The pathway in the back garden was good for running up and down too, counting the number of times I could do it and making sure I only stepped on each slab once with one foot. I was never fast, never very good at running though.

Dens were a big part of my time, a place to hide, a place to feel safe, blankets, cushions, tables I got very good at making them. Once when the Willow tree had been trimmed I even made one outside from the branches and I was sooo proud of it I wanted to try sleeping in it but it was too small.

Things like that never seemed weird, since I was the only child my age in my garden…who was I to compare it to?

As for hypersensitivity…the usual things of having my hair brushed, to the point where I actually cut it off myself with nail scissors to make it shorter thinking it would hurt less…I was right but not till my mum noticed and got the hairdresser to cut it short properly. Weirdly as I got older and it wasn’t so full of tugs I would seek out having my hair played with….still do when I can! I miss the boyfriend I had who was happy to brush and play with my hair when I was stressed. Recently I found out that that tingling feeling I get when I watch other people having their hair touched isn’t unusual and is classed as ASMR….youtube is full of videos for people who find it relaxing.

My sense of smell, I miss it now that medication has stolen it from me. As a child I could smell the change in seasons, I can’t explain it but there was a scent in the air when the world transferred from spring to summer to autumn to winter and the smell of snow in the air…I still occasionally get that. Any slight smell of “gone off” in food meant I couldn’t touch it and still can’t when I get a whiff of it.

Some perfumes, colognes etc actually physically hurt or like lavender give me headaches and nausea. That hasn’t waned, somehow they cut through the nasal problems I have and when they hit my sinuses wow it’s a shock :/

Food textures….I can’t stand the texture (or taste) of liver, kidney, cooked cauliflower, butterbeans, pears the list goes on.There’s something about the way they feel that make me gip, an almost gritty, clayish, texture I can’t quite describe. But I love raw vegetables the crunchier the better! I learnt as a child to force myself to eat things I hated because I wouldn’t get away with not…..make sure you swallow it as whole as possible and before the things you do like so it covers the taste 😉

Weirdly when it came to flavours I hunted out the strong ones, drinking undiluted squash, lemon juice, vinegar, sucking on lemons, salad cream, mixing together weird flavours other people find repulsive.

Sound wise I can’t say I have “perfect pitch” but since I can remember the slightest discord and it causes an involuntary twitch, it makes me physically uncomfortable when things aren’t in tune. Frustrating now that I struggle to control my own voice, to the point where I won’t really sing even alone as it annoys me too much that I can’t keep in tune. Not good at work where the other people can’t sing in tune for the life of them even with nursery rhymes!

I struggle when there are too many noises going on that I can’t control, if I have my music turned up loud by choice then that’s fine, even gigs don’t bother me I enjoy the almost all encompassing feeling of it. But when it’s a crowd of people, or music playing in shops, it becomes too much and I panic, I have to get out of the situation. I used to use my headphones as a coping mechanism, sticking them in before leaving the house and only taking them out when really necessary. Busses, trains, walking in crowds, they were essential to my “armour” but when I was having therapy for anxiety I stopped using them because it was stopping me facing the anxiety and making it worse.


Loud noises and sometimes even just certain frequencies at low volume, make it feel like a shock running through me. The kettle clicking off, toaster popping, a doorbell, phone ringing can all make me jump out of my skin. Fireworks are terrible  especially the ridiculously loud ones that go on now, randomly banging when you least expect it, leaving me and my dog both tense, shaking and turning up my music to block them out.

As for trying to sleep when I could still hear televisions, or conversations going on or noises outside…that was and still is an impossible task for me. I find it easier to sleep with music or in front of the telly with sounds I can recognise than to try and ignore those little noises that I can hear.

No idea what any of this means for me, except it’s difficult to cope with sometimes and I wonder if there’s anything to it. At least if I have it all written down and I want to go for assessment I can show them rather than trying to remember it off the top of my head.

a bit of creation to ease stress

Since leaving my last job and going back to just helping out at the family business I’ve needed to keep busy.

Luckily enough a very good friend of mine is expecting her first baby so I had the perfect excuse to get out the wool and get creative. So first things first a crochet baby blanket in neutrals as she doesn’t know the sex and a few baby hats and mittens that are always good to have. I played with putting a pattern on a couple and got a little extravagant on the woodland theme!

Luckily enough I actually chose just the right colours to match the nursery 🙂

Then inspiration struck. I’ve seen a few different versions of very hungry caterpillar costume that photographers use and decided it needed “tweaking”.

For a start most of them were just a bag and as anyone who has had a baby recently (or like me just knows random facts) knows, that’s not safe for a baby to actually sleep in. So to make it usable I decided to add on the arm holes and fastenings so they can actually let the little one sleep in the sleeping bag with lots of space to kick around at the bottom.
This one I’ll give to them when the little one is finally here (she’s overdue now) with a copy of the book to read as well.

When another friend saw all these bits on facebook she asked me if I could do “something fairy or toadstool related” for her little girls bedroom. Again I went hunting for a pattern someone has already come up with and found a pattern on craftyiscool that I liked and decided to give a go.

Me and my tweaking, I can’t help it! but on this pattern the first one I made was pretty close to the pattern, just made everything in crochet without the felt for white spots and windows, then added some grass leaves on the back.

When my mum saw this she loved it especially the little gnome I’d made to just fit through the door. She asked about making a caterpillar to sit on top as in Alice in Wonderland because she was having a themed Macmillan coffee morning. I agreed I could come up with something and when we decided it would work as a game for people to win it I made a second one. The second version had a lot more “tweaks” because I removed the porch just putting on a door, made some 3D creeping plants to grow up the side, larger grass leaves at the back. People are still guessing his name this week so shhhhh I’m not telling 😉

Now as I said the reason I found that toadstool was the request of a friend. I suggested to her that it might be good to have something her daughter could use and decided upon a pyjama case. I made a rod for my own back in other words because guess what no one ever seems to have knitted before? that’s right a fairy toadstool house pyjama case or even a cushion. On went the thinking cap, doing, undoing, redoing and much much tweaking so tell you what here’s the “in the making” pictures I took to remind myself what I’d been doing.

the only thing I didn’t design myself completely was the lily of the valley flower petals. I can’t find where I got it from now! but if I do I’ll put a link. The rest is all my own minds weird wanderings and hopefully when her little girl gets it in the post in the next couple of days it will make her smile 🙂

So there you go. The last month and a half of wooly madness that has been going on.

I’ll leave the catch up on my life for the moment (it’s been busy and this is already quite long) I’ll leave it at…..Buying a bungalow!

OK back to my homeless hat knitting I go 😉

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