End of my tether

It seems to be one thing after another at the moment and if you are bored reading it you can imagine how tedious I am finding living with it? The week after my unhappy hump day went reasonably well. I only needed two days on the diazepam and then it was taken as and when needed. I was bobbing along quite nicely until 4.20am Tuesday morning when I woke up with that familiar sinus pain like I had been smacked with a shovel and a distinct lack of balance that let me know Tuesday was just going to be awful. I had a migraine and this one was going to be an utter bastard.


I fished out my neck collar, took what pain medications I could and propped myself up on my pillows hoping that I had done enough to limit the attack to a few hours. However it wouldn’t have mattered what I had done yesterday this migraine was going to rate number 2 on the worst migraines ever – number one having taken place in either February or March and left me with amnesia. I didn’t drink or eat for well over 16 hours because even the thought of drinking made me want to puke and although my stomach was burning, I just couldn’t eat as I again felt so nauseous at the prospect of eating that I just had to ignore the rumbling stomach and hope that I wasn’t sick from being hungry.


I don’t remember a lot of yesterday, I remember at around 9am shouting help because Jay hadn’t twigged that anything was wrong and hadn’t bothered to check on me . He thought I was having a long over due lie on. I couldn’t roll over to grab my phone and I couldn’t think what to shout to get his attention. I was also having diarrhoea at this point (not in bed thank goodness but had resulted in 6 trips to the bathroom where I had stumbled clinging onto the safety rail) which was really fun when any smell good or bad was making me wretch and of course my shit smelt of roses and rainbows LOL! My head also felt like an axe was attempting to cleave it in half every time my head left the pillow. Help indeed was needed, but what could be provided was limited. Hot water bottles and a basin were brought to me. Thankfully I wasn’t sick but Oh how I wanted to be. 


Without being melodramatic the pain was so bad yesterday there were points I wanted to go to sleep and just not wake up. I have been through the agony of a CSF leak and although that was awful there was always some relief at some point. There was nothing yesterday the pain was just unrelenting, the light was too bright but my face was too sore to wear sunglasses. I was sweating and then I was freezing cold. I wondered if I had contracted meningitis. I did actually consider calling 999 for an ambulance but I couldn’t bear the prospect of being poked and prodded, expected to answer questions and be in a noisy environment. You know you are poorly when you don’t want to move and you don’t care that you should be calling for help.


At some point during the morning I heard them talking about oxygen on the radio ( I’m very lucky that I don’t need complete silence during an attack just a darkened room) and I remembered oxygen always helps me when I have a migraine. Another plaintive Help was shouted and Jay sprang into action set up my oxygen machine and got me hooked up to it. He also got me a bottle of water because the orange squash he had given me was turning my stomach and after each mouthful I wanted to bring it back up and more. The oxygen did help it lowered the pain level to an 8/10 instead of the 10/10 it had been since 4.20am


I spent the majority of the day in bed. At 1pm I got up because my back was killing me. That was a dreadful mistake after an hour I went back to bed and straight to sleep despite the pain. I got up again at 4pm and managed to have a drink, then I was so thirsty I couldn’t stop drinking and then I was ravenous with the post migraine munchies. I could have eaten my body weight in whatever food you brought me. I was despite sleeping all day fucking shattered. I went back to bed again at 6pm tried watching some tv but having jolted awake three times in 30 minutes gave up and slept solidly until 1am…..and was then awake for the rest of the night. I managed to get an hour of sleep between 7-8am this morning.


Today is brought to you by the letter C – for Coffee. I feel like I am floating I am so tired. I have managed to sort myself out and have a shower with Jays help. Honestly I was honking after sweating so much yesterday. My autonomic nervous system was going mental. I feel like I have taken too many pain killers as my head is floating and my face feels like it is sticking out 3 inches further than it is. I am going to put a letter together for my gp telling them I can’t go on like this. Just thinking about the fact I will have yet another migraine next month is making me cry. I have been tracking them on my phone and they happen at least once a month and always between the 18th -22nd of the month. It isn’t fair on me for these to continue to happen and it isn’t fair on Jay as he can’t take one day off a month to look after me as I am so ill I can’t do anything for myself. 

People also seem to be under the impression that you have the migraine and then like magic you are back to normal again, in reality it can take me several days after a severe attack to feel like I am functioning anywhere near normal, so it’s not just one day a month I am losing but 3 or 4 depending on the severity.


From what I have briefly read up during the early hours of this morning around 40% of women find their migraines worsen during peri-menopause and menopause. Even in the absence of menses there is still a very slight hormone fluctuation which can be enough to trigger a migraine. Which would be my case. I stopped my contraceptive pill in December as I wanted to see if the menopause fairy had joined me and it has now been over 5 months and there has been no period. Yet my migraines will always occur since stopping the pill between the 18th – 22nd of the month without fail. Occasionally like this month I will get two migraines, I had one last Tuesday, so exactly a week apart. I am at the end of my tether with it. All I want to do is cry but whats the point? It won’t change anything. I need specialist input now so I am going to write to my gp as due to Covid-19 I don’t want to go to the surgery unless I have to and ask if they ever did contact neurology like the doctor said she would and if they had suggested some medication as continuing on like this isn’t an option. I’m at the end of my tether with it.

Face masks

A few weeks ago I helped the local NHS hospital by altering some surgical masks for them that had come in but the elastic ear loops were too big. This led to a few of my friends asking if I would be making face masks or would I make them some face masks for them or their friends and family. I know the jury is out on the use of face masks. This post isn’t about that, there are research papers that are for and against the use of face masks by the general population. I think we can all agree that “home made” face masks when worn provide protection to other people more than the wearer – which is why many countries have adopted  the wearing of face masks so that they can all protect each other from Covid-19 and other nasties.

 
Initially I was very much in the camp of home made masks are bad. That they provided a false sense of security and that by having poor mask etiquette that they could cause more harm than good – if someone continually touches the front of the mask when wearing it and doesn’t wash their hands after they are capable of spreading their germs far and wide on every surface they touch. Since then there have been articles in The Guardian,  The New York Times that have shown even home made masks when constructed from the right materials can offer a level of protection that hadn’t been anticipated. Add in a filter to those masks – made of an unwoven material or a special mask filter ( you can buy at various oulets) they can provide as much protection as the surgical masks I was altering the other day. A link to the New York Times article can be found here.  The Daily Mail did an article –here The Guardians Article can be found here. So I am now very much of the opinion that yes we should all be wearing face masks of some description when out in public to help protect each other.
So for the last 20 days when physically able I have been making masks for friends and family to wear. All I have asked for is the cost of materials, being on a tight budget I can’t afford to be giving away material, elastic and pipe cleaners etc as much as I may wish too. With Mr Myasthenia kid at home, he has been able to keep Dembe entertained and do the chores I would normally push myself to do that would wipe out my energy reserves. Even with him doing that I have had a couple of days in that 3 week period where I have crashed hard just due to pushing myself too hard for too long in an effort to keep people supplied with masks and not letting anyone down. I am on an enforced break now as I have run out of elastic – I thought I had ordered enough but apparently not! I am awaiting fresh supplies. 
 
To be honest I am quite glad for the break, I am so tired mentally and physically it hasn’t been until I have stopped that I have realised how far past my reserves I have got. I always find it amazing how knackered I can be doing nothing ( but obviously I am not doing nothing as I am taking care of myself. I just judge myself way too harshly and think I should be as active as the next person even when in reality I know that is an impossibility ). There have been evenings when I have been so tired that I am unable to form a coherent sentence or stand up straight. The rest was long over due.
 
For my mask pattern I used this Youtube tutorial
 
 
Mr Myasthenia Kid has been helping me with cutting, pressing , folding pipe cleaners for the nose bands, going to the post office etc All the things that can take me more time than an able bodied person and things that I can’t do such as a post office run. Without his help and support I would never have been able to make the number of masks I have. 
 

 

 
 

 
I have been running on adrenaline for days, I knew I had. Last weekend I was supposed to be taking some time off for sewing but instead I started several other projects. Today (Tuesday  21st April ) is the first time I have sat and just done nothing. Everything is hurting and I feel zombie tired. Which is why I tend to keep pushing and pushing because I know how incapacitating the crash will be. I have always been a boom and bust merchant. Plus keeping busy stops me worrying about Covid-19 and what would happen if either of us got it. 
 
So due to my lack of elastic I have had to have a day off and it feels strange. I’m so tired though it was very clear that I needed it. I did manage to get Jay to help me highlight my hair as I am having real problems lifting my arms above my head. Within seconds of doing it I am getting awful pain in my shoulder joints. Normally I would battle on through but it is just too sore for that and I am having to put my arms down. He has done a good job and now my roots look far less obvious than they did previously.
 

 
I did have a lovely surprise this morning finding out that Natasha McCarty from Natasha Makes was sending me a gift after hearing about my run in with a pin cushion on Saturday!
 
 
 
On Saturday when I was busy making a baby bib for a friends new baby, I didn’t notice that I had knocked my pin cushion onto the floor. It had gone pin head side down leaving the sharp ends pointing up but hidden by the pin cushion. I use this particular pin cushion as it has sentimental value to me. It was my late paternal grandmothers and I use a lot of her old sewing stuff on a daily basis. It was only when I got up from my sewing machine and I removed my foot from the pedal, that I placed my foot on top of the pin cushion ( I was wearing socks only) and put all my weight through that foot to stand up. To say the air was blue would be an understatement! It took me ages to get all the pins out of my foot as there were around 20 or so on the cushion. I yelped and cried, there was blood and tears. Later when I looked at my sock I realised that the blood had come right through . 3 days on and the sole of my foot is still a little sore, not something I ever want to repeat, especially as a long time ago I stood on a darning needle and had to go to the local minor injuries unit to get it removed whilst using gas and air! I will be making the pin cushion as soon as it arrives and I can’t thank Natasha enough for that. 
 

 

 

 
 
Dembe modelling my creations from last weekend!
 
So for now I am putting my feet up and allowing myself to chill out for a few days!