I'm in the second week (feels like lifetime) of the worst pain I've ever experienced thanks to the MS Hug. It sounds so lovely, a cuddle from MS, but believe me it's torture as the MS Trust explain.
I started off determined not to take any pain killers beyond the neuropathic pain relief I take every day; but within 48 hours I gave in and took the prescribed analgesic and 24 hours later doubled the dose. At this level I don't actually have less pain, but at least I can sleep through most of it which makes each day more bearable.
In my windows of consciousness I am spending quite a lot of time thinking about pain and it's causes; it's different forms especially of MS pain and pain relief. I haven't come to any great conclusions; but thought my ponderings and diagrams (created to help explain my pain to Mike and Rachel) might be interesting to others. If you'd like actual facts about pain then I recommend Pain by MS Trust.
I'm sure most of you have been asked to rank pain you've experienced in your life. From 0 for no pain to 10 for the worst pain you've ever experienced. I never got much above 5 with childbirth but way up at 9 with gallbladder pain. But this pain, on my old scale, is way over 15 which probably just means I was over-judging the gallbladder pain. I've been wretching with this pain and a few times have thought I would pass out, it's not great at all.
I've made my own pain scale diagram to help see the funny side of pain.
highly unpleasant physical sensation caused by illness or injury. "she's in great pain"
mental suffering or distress. "the pain of loss"
Until the last few months I'd never really thought about pain and what different people might be experiencing every day or when they're in pain. According to this dictionary definition, pain is a highly unpleasant sensation caused by illness or injury. But what about pains which are just part of life? I have had strange physical sensations which I guess might be considered unpleasant. Have you ever thought about what you feel and if it's normal?
On a normal day; what do your arms feel like?
How about your legs?
I don't remember a time when my left arm doesn't feel useless. I mean that it's always heavy and feels dragged down and takes a huge amount of effort to move it. It's been like that since my teens at least and I put it down to being very dominant right handed and therefore my left arm is a bit useless.
Is this normal?
And my stomach, it has always rumbled and been sore after every meal, that's my normal and I just assumed everyone could feel their stomach moving after meals.
Is this normal?
How about loosing the feeling on your face? I often can't feel my face especially my left cheek and forehead and then it will come back and feel strangely warm. I never even thought about why that might be.
But now I'm wondering, is this normal?
Perhaps these were and are all symptoms of MS?
I have broken down the various pains and other strange feelings I have experienced into seven forms.
I think about them as building blocks, with the lower numbers being annoyances which I've got used to; and the higher numbers having a dramatic impact on my life. The higher the blocks of pain stand on any given day, the worse I feel and the more my day is negatively impacted.
The foundations of MS pain are not pains, I have named them as strange sensations like temperature changes or tickling feelings or the current super strange sensation of my knee bleeding. They are not debilitating, they can be quite entertaining to identify, but they are all part of the pain structure and they do take part of my brain time to process and they can be very distracting.
1. Pins and Needles
I get pins and needles in my limbs all the time, I've even had it in my tongue or in patches on my body. They are a huge annoyance and a distraction which I can ignore through mindfulness or by applying pressure on points elsewhere on the body. They bothered me a lot when I first got them, but not anymore.
2. Numbness in limbs
I often loose the feeling in my left leg and I don't think I've really felt below my left knee for about 6 months. I get bruises on my left foot and have cut myself and not noticed. It doesn't bother me although I've come to realise I do need to be careful. More recently I can go numb in the right leg, which isn't funny when the left leg is also being useless; or in my arms which means I drop things.
3. Shooting pains in limbs
These are like electric shocks and they can happen in any part of the body. They demand my attention, especially the first few times they happen in a day; but then I can normally distract myself from them. After an hour though they're tiring and mean I can't concentrate properly and get exhausted quicker than normal.
4. MS hug low level
I used to think this was horrid, but since I've had the proper full on MS hug I long for those days. This lower level hug, once I've got used to it, can be blocked out but that takes energy and concentration, I need to lie down to get any relief of any sort and this is a huge impact on my day.
5. Spasms in limbs
I tend to find them funny in my legs, although means I can't walk safely, but really difficult to deal with in my arms because can't do anything reliably, tend to tense muscles so need to be constantly aware of this and relax, stops my ability to think clearly;
6. MS hug with spasms in torso
I can't distract myself from it, every breath hurts, can't get comfortable, pain moves as spasms move and then I find myself tensing other muscles to try and get relief. It takes all my cognitive ability to relax and cope, pain killers have their own side effects including sleep which doesn't solve the exhaustion and disrupts my day.
I often get a headache, mostly associated with optic neuritis and therefore through the eye balls which affects my vision and really gets me down. I can't distract myself and can't sleep with this which makes me really irritable. Sometimes I get migraines, these are impossible to ignore and I need a complete shut down and sleep for a few hours.
But that's not the whole picture!
There's more to pain than just pain. There's the ability to cope with pain.
I can cope better with any of these types of pain, or buildings of pain, after a good night's sleep.
How the building combination is made up of these different pains complicates how I feel. And when they change in a day that means everything is up for grabs. If I'm ill, especially with a temperature or with swollen glands, then everything is exacerbated. And then of course there's the constant tinnitus which is at two pitches all the time and sometimes as many as four and is really distracting. Everything is worse in a noisy or busy place because that's too much sensory information to process.
And MS likes to throw in fatigue and exhaustion separately into the mix, and this is like a load pushing down on top of the pain making it all so much heavier and harder to lift off.
And then there's the pains of mental health, both because I'm feeling rotten and that's depressing and because the cause of pain is anxiety inducing and also because MS affects mood. Put this anxiety and depression into the foundation of the pain blocks and the whole system becomes less stable and more inflamed; an even harder situation to manage.
PS. There's a TBA box on the top.
I don't know what this is, but I didn't want to tempt fate by saying I had this pain thing all sorted out, so this allows for something I'm yet To Be Advised about. I'm hoping I never get the memo.
PPS. This is not a pity party.
Please don't think I've written all this by way of getting your sympathy.
I have written this as a way of trying to understand my own pain and my life and how I can manage my pain to live life the best I can. I have written it because I have family and friends who want to try and understand what it's like and I hope this might help. And I have written this because writing and creating diagrams is a great distraction from pain and has been helpful over the last week, although I've been typing too long now and I'm tired and in pain so there I'll stop.
Last weekend we were in a local supermarket and, as usual, most people either ignored me in my wheelchair or tried not to stare while staring none the less. I am used to it now and with my sight loss I don't even see it happening, but it really bothers Rachel who gets wound up by the behaviour.
But she and I were reminded just how lovely some people can be when two little boys (probably about 3 and 5 years old) ran up to me
"Excuse me, excuse me; why are you in a yellow chair?"
"Because if I tried to walk like you I'd fall over quite quickly"
"How does it work?"
"I use this joystick to go forward and backwards and left and right"
"Can we have a go?"
"Sorry no, that's not safe, but you can press the horn button if you want"
So they pressed the horn button
And then their mum emerged
"No boys, no, don't touch, come away, come on"
I reassured her
"They are fine"
"Boys, come away, stop bothering her"
she said without actually speaking to me.
And off they went chatting about how clever my wheelchair is.
Rachel and I were so happy to have had this interaction with the boys; it is just wonderful to be able to talk to people and answer the questions they are bound to have. Rachel summed it up perfectly
"Young kids aren't scared about asking but when they grow up they learn (wrongly) that they mustn't ask because it's rude. But then they just stare because they are still curious."
She's so wise. Our curiosity about difference doesn't diminish as we get older, it's just that societal norms tell us we shouldn't ask about people's personal business. And of course there might be people who don't want to be asked; but I'd much rather have a conversation with people, especially friendly kids, than be stared at or ignored.
I have not been given this nor am I being paid for this review; I am purely writing this after being blown away by the benefits of such a simple and low cost magnifier.
Rachel has always enjoyed using her microscope but it's not exactly easy to carry around and has no flexibility for viewing anything bulky. I saw smart phone microscopes advertised online and thought they might be fun and useful; and at less than £10 I bought one for Rachel for Christmas. She opened the microscope on boxing day, put it on her phone and bingo! She was off looking at the detail of the carpet, her clothes, random food, dust, leaves and more.
About an hour later I managed to get a go and was amazed to find that I could read words on a newspaper using it. This might not sound that special, but when you're vision is as poor as mine (I'm severely sight impaired - blind - and can't read text below 20 font and even that can be a strain) it's a huge cause of excitement.
I spent the next few days trying out all sorts of text on different types of paper and found the microscope unbelievably easy to use; in fact it was just as good as the Rehan Looky 4 which I had spent £400 on to help me read. It is small and light, simple to use - you just put it on the phone and switch on the camera - and because of it's low cost you don't have to be anxious about using it.
Don't get me wrong, the looky 4 is far and away a better magnifier and has lots of useful tools including reverse colour and blue and yellow; I wouldn't be without it for reading letters. But for less than 3% of the cost of the Looky this smartphone microscope is amazing and can fit in my small bag for checking small print on packets when I'm out and about. It even uses the phone light (camera flash) so works in dark places. In these photos you can see the small print on my eye drops really well magnified.
And if you're more like Rachel and love looking at clothing under the microscope, here you go
To be clear at the get go; we were given one Amazon Echo Dot to review. Subsequently we have bought ourselves three more.
What is the Amazon Echo Dot?
Amazon Echo Dot is a hands-free, voice-controlled device that uses Alexa to play music, control smart home devices, provide information, read the news, set alarms and more
Connects to speakers or headphones through Bluetooth or 3.5 mm stereo cable to play music from Amazon Music, Spotify and TuneIn
Controls lights, switches, thermostats and more with compatible connected devices from WeMo, Philips Hue, Hive, Netatmo, Nest, tado° and others
Hears you from across the room with 7 microphones for far-field hands-free voice control, even in noisy environments or while playing music
Includes a built-in speaker so it can work on its own as a smart alarm clock in the bedroom, an assistant in the kitchen, or anywhere you might want a voice-controlled device
Always getting smarter - Alexa updates through the cloud automatically and is continually learning, adding new features and skills
Image from Amazon Website
Why did I think Amazon Echo Dot would be helpful?
I really couldn't imagine how it would be of any use to me.
I could use my phone for everything I thought it could do and thought it was a gimmick.
But hey, it was worth a try and Rachel was going to enjoy trying it out so I thought I'd have a go and see what it could do.
How did we use it in the first week?
Jokes - Alexa tell us a joke was surprisingly entertaining in the first week
Music - Playing music from Amazon Music where we keep all our music was really useful and we were surprised by the strength of the speaker and the ease with which it found our playlists
Weather - It is so much easier for me to hear the weather than try to have my voice over read my phone's weather app; this was a big advantage
Lists - I used the list feature a fair amount in the first week and although I've barely used it since it will be helpful when we're creating family lists for packing for holidays etc
Alarms - we all now use Alexa for our morning alarm calls and it works better than a phone alarm, it must be the pitch
Timers - this has been helpful for all sorts of things from cooking to challenges to games to medication reminders
How did we use it in the first month?
Controlling light bulbs - Mike got over excited with the idea of helping me with light levels around the house and has spent many many hours buying new light bulbs and programming them so that we can now control every single light in the house to turn on and off, change light level and for some of them even change their colour
IFTTT triggers - we have been using a range of the IFTTT triggers with favourites being connected to the lights so the trigger "Alexa trigger night night" turns off every light in the house in case we forgot any
Home security - the great thing about having the lights under control is that we can turn them on and off when we're not at home - at least Mike enjoys this and it makes him feel that the house is safer
Door bell - even the doorbell is Alexa controlled
How has Amazon Echo Dot helped me as a person with sight loss and mobility issues?
Can control light levels with voice
Can control colour of lights with my voice
Can set alarms and timers easily
Can listen to my audio books and music louder
Our future plans
We're looking into new door entry systems so I can open the door without having to spend 5 minutes hobbling around the house. We're hoping to use voice commands for this.
Only when Rachel's friends come round and think Alexa is the best thing they've ever found to talk to and just don't stop.
It's worth mentioning that Mike is a computer programmer and has spent dozens, if not hundreds of hours writing code to get the lights to be this clever. But he's enjoyed doing it and has helped him feel like he's being useful.
Right up front I want to confirm that I am writing this because I am so impressed with the Instant Pot. I was not given one, I bought it for myself and I am not being paid in any way for this review.
What problems do I have cooking?
I have two problems with cooking:
1. My Sight
I am severely sight impaired which means I have a small £1 coin sized field of vision which isn't even perfect in clarity. I am not safe with a knife, I discovered this by experience. And I find it really hard to tell one tin from another let alone when things are cooked.
2. My energy and pain levels
MS is a disease which causes pain (in many different and changing places on different days) and exhaustion. Every day is different but even on a good day I can not stand for more than a few minutes or stir a pot for more than a few times.
Why did I buy the Instant Pot?
I wanted to try and take some of the load off Mike and Rachel and help cooking meals again. I had heard from some visually impaired friends that the Instant Pot was great and after reading lots of reviews decided it was worth trying out. I knew you could cook from frozen and leave the pot to do it's thing without having to stand and stir or watch and check.
What is the Instant Pot?
This is my instant pot on the side in my kitchen. It is a pressure cooker which plugs into the socket behind it. I place it close to the hob so that any steam can go up the extractor fan.
Instant Pot is a Programmable Pressure Cooker designed to be Safe, Convenient and Dependable. It speeds up cooking considerably, uses up to 70% less energy, and produces nutritious healthy food in a convenient and consistent fashion.
How does the Instant Pot help me?
It takes me no more than 5 minutes to saute any meat and onions and then add in whatever frozen veg I want to use (or come to hand) for whatever I'm cooking. I can sit on a chair to do this and this saves my energy. It only needs stirring a few times and then I put the lid on, press the button and leave it.
On a good day, so usually about once a week (not at all last week but twice the week before) I can now prepare a meal in the morning, when my energy levels are at their best, and know it will be ready for our evening meal. This is not only wonderful for Mike but also good for my own self esteem.
And to this the fact that the food I am preparing is healthy and balanced and provides meals for 2 days and this is more success than I even hoped for.
What have I cooked in the Instant Pot?
This is the lamb casserole I cooked in the Instant Pot this morning and is being kept warm until we eat it this evening when Mike gets home. It is bright in colour because all the vegetables keep their form and colour and nutrients. To make this I used the saute function to brown the garlic and onion and lamb pieces; I then added a huge range of frozen prepared veg including butternut squash, brocolli, cauliflower, spinach and mushrooms; plus a tin of chopped tomatoes and herbs. I set the timer to manual for 20 minutes and let it do it's thing. Within an hour I heard the beeps to say it was ready and it's been keeping warm ever since.