….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!
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
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!
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.
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!
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.
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).
(of a substance or object) strong enough to withstand adverse conditions or rough handling.
“tough rucksacks for climbers”
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”
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
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.
I’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).
Now 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.
What’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.
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.
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.
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.
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.
I 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.
I’ve been knitting and crocheting for charity the past year or so with a group on Facebook. We make blankets, hats, scarves, mittens, toys, you name it for those in need and it feels great to give a little bit of something to those who need it.
Quite often these knits are for the elderly or homeless, using free patterns we can find online where possible. But the thing that’s got my attention most recently is itty bitty things for newborns especially premature babies.
One of the hardest things a parent might ever have to deal with is the passing of an infant. No one can make it easy but if making something for them that will fit their tiny angel helps, I’m happy to do it.
With that in mind I designed a little crochet cocoon for Premature Angel babies, that I’ve attempted to write up and I’ll share on here for free (if you make it, sell them, share it, all I ask is that you give me credit for the pattern)
a 4mm hook
Double knitting wool in baby soft
a needle to stitch in ends
a button to fasten.
The abbreviations I’ve used are US versions (though I’m from the UK they make more sense to me)
SS- slip stitch
SC- single crochet
HDC- half double crochet
DC- double crochet
R 1: Start with magic circle working in the round. Ch 3 then 7 DC into circle, SS into last chain on Ch3 (8)
R 2: Ch3 and 1DC in same stitch, 2DC in next 7 stitches and SS into last chain on Ch3 (16)
R 3: Ch3, *2DC, 1 DC* repeat around and SS into last chain on Ch3 (24)
R 4: Ch 3, *2DC, 1DC in next 2 stitches* repeat around and SS into last
chain on Ch3 (32)
R 5: Ch3, 1 DC in every stitch. To create overlap of opening, work 1DC into back of first stitch of the round, 2DC into back of second stitch (35)
You will now be working in rows rather than rounds
R6-8: Ch3 turn, 2DC in 1st stitch, 1DC in each stitch around, 2DC in last chain of ch3 (44)
R9-12: Ch3 turn, 1DC around, 2DC in last chain of ch3 (50)
Cut yarn and sew in ends.
For the hood, working in rows
Join yarn on 22nd stitch of last row,
R1: Ch2, 1SC, 1HDC, 1DC in next 2, 1HDC, 2SC
R2: Ch1 turn, 1SC, 1HDC, 1DC, 2DC in same stitch, 1DC, 1HDC, 1SC in next 3
R3: Ch1 turn, 1SC, 1HDC, 1DC, 2DC in next 2 stitches, 1DC, 1HDC, SC in next 3
R4: Ch1 turn, 1SC in next 2, 1HDC, 1DC, 2DC in same stitch, 1DC in next 2, 2DC in same stitch, 1DC, 1HDC, SC in next 3
R5: Ch1 turn, 1SC in next 2, 1HDC, 2DC in same stitch, 1DC in next 2, 2DC in same stitch, 1DC in next 2, 2DC in same stitch, 1DC in next 2, 2HDC, SC in next 3
R6: Ch1 turn, 1SC, 1HDC, 1DC in next 5, 2DC in same stitch, 1 DC in next 3, 2DC in same stitch, 1DC in next 5, 1HDC, SC in next 2
R7: Ch1 turn, 1SC, 1HDC, 1DC in next 10, 2DC, 1DC in next 10, 1HDC, 2 SC.
Cut yarn and sew in ends.
For the edging:
Attach contrasting yarn at the overlap. Ensuring even spacing of around 2 stitches for each loop.
Ch3, *SC into edge, Ch3* repeat around the edge and hood, finishing back at the overlap.
Cut yarn and sew in ends.
To go with the cocoon and give the parents something to keep or to bury with the baby as they wish, I used a tiny teddy crochet pattern by LisaAuch just adding a matching coloured scarf or tie to go with the edging colour of the cocoon.
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)
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 my Mother how much she terrified me when I was younger, that there are still moments when she’s angry that she scares me.
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.
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).
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.