Getting back to normal, if there is such a thing.

Around two days after I wrote my last post “Washout” I ended up contacting my doctor and was prescribed antibiotics. I had been running a temperature for around a week and I just wasn’t feeling any better. 

 
Wednesday morning (30th January) I woke up in the middle of the night feeling like someone had smacked me in the face with a shovel. My sinuses hurt, my teeth hurt and I felt violently sick. As I quite often get migraines like this I decided to try to get back to sleep, it didn’t work. As the morning wore on the pain was increasing where as my migraine attacks last 12 hours at the same intensity I had to concede that this wasn’t a migraine, I had sinusitis and probably a chest infection. When I described my symptoms to the gp she agreed and I was given a 7 day course for amoxicillan. No wonder I had been feeling so awful.
 
After 3 days on the antibiotics I was feeling almost human again. However as usual the antibiotics did a number on my innards which required me to take at least 6 imodium a day. The diarrhoea was so bad it left me feeling drained and triggered off very painful spasms causing me then to have bowel adhesion pain. I stuck with them until the end of day 5, after that I just couldn’t do it anymore. 
 
I could cope with the exhaustion levels if my pain levels hadn’t suddenly just ramped up. Out of nowhere I am back to having extremely cold legs which have to be warmed up by a hot water bottle or by sitting on my electric throw. When going out in the cold and believe me it’s not that cold for this time of year, yesterday it was between 6 and 7 degrees Centigrade, I was in agony with my hands despite having my arthritis gloves on and my legs were aching despite having leggings on under my jeans. I had just gone through a really good period, pain wise and had barely been touching my oramorph which I use for breakthrough pain but as of two days ago, I am taking it every 4 hours when awake to try to knock down the pain levels I am currently experiencing.
 
At the moment there seems to be no happy medium temperature wise. I am either hurting due to the cold or stripping off my layers because I am suddenly boiling hot. So hot that I am sweating. An hour later I am back to freezing again and this cycle repeats itself throughout the day. I wish I knew what I could do to combat it. It’s not like the flushes I was getting before taking the red clover, black cohosh and the sage leaf supplements which have done wonders for my hot flushes. This is a temperature regulation issue. And temperature control is part of the autonomic nervous system. I guess it’s just adding in another element of fun.
 
On a happier note Dembe is settling in very well, you can read about his adventures at www.thedembediaries.com I publish every Monday letting everyone know what he has been up to over the previous week. I don’t know where I would be without him if I am honest. It is exhausting though looking after a puppy when you compare looking after adult dogs who are independent and happy to be left sleeping for most of the day.
 
Dembe is very close to me but I wouldn’t expect any different, he and I are alone together all day ( around 11 hours) bar Jay coming home for 30-40 minutes at lunch time. Dembe loves Jay too, you only have to witness the furious tail wagging when Jay comes through the door to know that. But he is a mummy’s boy at heart. He loves nothing better than curling up at the end of the sofa and sleeping, as long as I am at the other end. 

 
 
 
When I get onto my sewing machine or embroidery machine, he sleeps on the bed I made him in the kitchen. Due to feeling so rotten, not a lot of sewing has gone on. However I did manage to finish this birth announcement cushion, which is a gift for a friend to celebrate the arrival of his daughter. By the time this blog post is published the gifts recipient should have it.
 

 
I am really pleased with the cushion as the feet are from one design and the text is from an inbuilt text on my embroidery machine however I had to get the placement and size of the text right so that the cushion looked balanced. 
 
I used a product called Sarille, which is a type of interlining mainly used on curtains. I saw in various groups lots of suggestions for using wadding behind embroidery designs that were stitch dense and being sewn onto lightweight fabric. I had loads of the Sarille lying around from when I used to do my subscription box. It has given the cushion a nice bit of body at the front and it has also ensure there is minimal puckering. 
 
It’s the first bit of sewing I haven’t had to force myself to do since Frankie and Mollie passed away. For a while there I didn’t know if my sewjo would ever come back or if Dembe would sleep enough for me to manage to get anything done. Jobs are taking me longer as I now tend to wait for Jay to be home before sewing anything. Embroidery is different as I can get up and move away ( when the machine / thread is behaving), so I can keep an eye on Dembe. He is very used to me doing bits of embroidery, he  will lie on his bed in the kitchen and go to sleep. Puppies do sleep a lot although when they are manically running around, chasing their own tails it can seem like they never sleep!
 
I have also managed to get two other bits of embroidery done today, birthday presents for March. I do like working ahead so that I don’t feel under pressure. Whilst I am in the mood to be creative I tend to go for it. Its only in the last few days that I have felt the creative juices starting to flow again. That has as much to do with getting over the infections as it does with dealing with the grief losing the dogs caused. 
 
Its taken 4 weeks for me to feel anywhere near normal and it is still very raw. I am managing to go days without crying where as in the beginning I was lucky if I could go an hour without breaking down. 
 
I am finding it very difficult at the moment to motivate myself to write this blog, mainly because the dogs, our Weimaraners featured in it from the very beginning. They are what kept me sane and kept me going, when it would have been incredibly easy just to give up and not fight anymore. It is taking some getting used to being without them. It’s a new normal and it’s going to take a while to get used to it.
 
 
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I quit……..smoking

Mr Myasthenia Kid has managed to pass on his sickness bug to me. He ended up coming home from work on Monday after vomiting twice. He spent the rest of Monday sleeping. I spent last night going from freezing cold to boiling hot, my hair is crazy this morning. I am also horrendously nauseous. So today’s offering will be short and sweet.

 

On 6th August I packed in smoking tobacco, over the previous couple of months I had slowly been falling out of love with it. It no longer tasted the same, smelt the same, I was smoking more but enjoying less and less. Because I rolled my own cigarettes I was also getting stained fingers which meant several times a week I was having to bleach them to get rid of the tar stains. I knew the time was approaching where I was going to give up. I just didn’t know if I would be able to do it.

 

At the same time as I was falling out of love with cigarettes, a friend of mine had given up smoking. Something I never thought in a million years would happen. She had bought a vape and literally swapped over from smoking 20 plus a day to none and solely using the vape in a few days. She brought the vape over to show me and a week later I bought myself one. With the intention of slowly reducing the amount of cigarettes I was smoking and using the vape.

 

I really struggled to get on with the vape, for some reason every time I inhaled I coughed my lungs up. I don’t know what was causing the problem but it was infuriating, why could I inhale cigarette smoke and not inhale from a vape. It took a few days of persevering but I got the hang of it. I was coming to the end of my tobacco and after the first cigarette of the morning on Sunday 6th August I decided that was it. I had enough tobacco for one cigarette but I just put it away in the cupboard. I haven’t smoked since.

 

A few days after stopping smoking I threw my tobacco tin away, bagged up the papers and filter tips which I bought in bulk and removed the ash trays from the house. We only ever smoked in the kitchen, but the difference in the surfaces keeping clean without me facing a losing battle daily against bits of ash and tobacco was enough to convince me, it was over. Jay took my papers and filter tips into work and gave them to my friends that smoke.

 

Giving up and switching to the vape has been easy, far easier than I thought it would be. I much prefer it to smoking. Over the last few days I have found that I am using it a lot less than I was initially. I did experience some problems with my blood pressure being quite low for a few days whilst my body sorted itself out. I gave myself a week for it to settle and if it hadn’t I would add a nicotine liquid to my vape to boost my blood pressure. Thankfully the giddiness and feelings of pre-syncope reduced and I managed to not use nicotine liquid.The other issue I have had is really painful sinuses.

 

I’ve had sinus problems for years. I regularly use a nasal spray as the inside of my nose gets inflamed and causes problems with my eustachian tubes swelling shut. Since stopping smoking I have been in a lot of pain with my sinuses, at some points it has been going into my teeth. I have no idea why giving up smoking would make it worse when I have always been told that it would make it better. It’s still hurting today but it is getting less as the days go on. I am hoping that this will eventually settle down.

 

I know that I will never be able to take for granted that I no longer smoke. I have stopped for years in the past only to start again. I will need to be constantly vigilant and be honest with myself that whenever I want a cigarette it is the addiction talking. So far it has been much easier than I ever anticipated it would be, I hope it stays that way.

Migraines the sneaky kind!

You may be wondering what on earth I mean when I say “Migraines the sneaky kind” up until last Wednesday, if I had read that I would have been scratching my head as well, because surely you know if you are having a migraine right? Well no not always, read on!

What I am referring to are migraines that disguise themselves as something completely different, so that they sneak up on you. Its not until its gets to the point where you are vomiting, avoiding the light (like some kind of vampire) and your usual pain medications arent working that you suddenly realise that what you are suffering from is a migraine and you’ve got so far into the attack that there is nothing left for you to do but ride it out.

On Tuesday 18th March 2014, I had one of these sneaky type migraines. I suffer with two kinds of migraines, classic migraines with an aura and Hemiplegic Migraines where I get no warning. With my hemiplegic migraines I wake up in the middle of the night with them.

http://www.webmd.com/migraines-headaches/what-is-a-migraine-with-aura this link explains the type of symptoms you get with a classic migraine with an aura.

http://www.migrainetrust.org/factsheet-hemiplegic-migraine-10913 this link gives a brief overview of the symptoms of a hemiplegic migraine.

I call them my sneaky migraines as when they start I don’t know what they are. I am awoken from my sleep with sinus pain, severe sinus pain that goes into my front teeth. Over the course of a few hours the pain increases to the point where I feel like my head is going to explode. I self medicate with sudafed (a type of sinus decongestant), nasal sprays and rinsing my sinuses out with warm saline. Nothing stops the pain and it just keeps increasing, I start to feel sick and then the light aversion starts. This is then followed by a feeling of numbness in my face and right arm, sometimes spreading into my right leg. Then suddenly I have a lightbulb moment and realise I’m having a migraine!

 In 2009 or 2010 (sorry I can’t remember the exact year) I ended up being taken into hospital for 24 hours because I was so ill with a migraine. When I was admitted I was wearing dark glasses and had my cardigan wrapped around my head to block all light out (and yes I looked ridiculous but I just didn’t care!). The medics treating me were concerned I had meningitis or a bleed on the brain. All the tests came back clear, I was suffering from a migraine.

This migraine started in exactly the same way as the one on Tuesday night did. It disguised itself as a dry sinus infection. I was so convinced it was my sinuses acting up. So on Tuesday my sneaky migraine had fooled me for a second time.

I felt hideously embarrassed all those years ago that I had been hospitalised by a headache but then a migraine isn’t just a bad headache, as so many people that have never had one seem to believe. A migraine is the kind of headache where you would do anything to stop the pain, even if it involved cutting off your own head.

So why didn’t I recognise that it wasn’t my sinuses but a migraine that was masquerading as such? Well I’m not alone in getting the two confused the link below states in one study of 100 people that believed they had sinus trouble over 90 of them had nothing wrong with their sinuses at all, they were suffering from tension headaches or migraines
http://www.webmd.com/allergies/sinus-headaches

This link breaks the study down further
http://headaches.about.com/od/diagnosis/a/ahs_sinus_mig.htm

I only discovered all this after my migraine cleared up around 13 hours after the attack had started. I was angry with myself for not recognising the fact it was a migraine and I searched the internet to find out if other people had the same sinus symptoms during their migraine attacks. I found a wealth of information about sinus pain and migraines but this only fueled my curiosity. I needed to know why the sinuses were involved, what was the mechanism behind this. I came across this site which briefly explains why the sinuses are involved
http://migraine.com/migraine-types/sinus-migraine/

As soon as I found out this information I shared it on facebook as I had previously discussed dry sinus pain with a few friends. It made so such sense. Sometimes my migraines that involve my sinuses aren’t so dramatic. The pain is severe, but I’m not light sensitive. The attacks will still send me to bed and I will  vomit with them.

I could never work out how it was possible to be in so much pain with your sinuses only for it to magically disappear 12-24 hours later. During these attacks I would take decongestants and rinse my sinuses with warm water to no avail. I feel such an idiot! All this time I’ve had migraines with sinus involvement. If I had taken other pain medication I may have been able to reduce the attacks, rather than solider on thinking my sinuses were playing up again.

Im not new to migraines I’ve had them since the age of 8. Since that age they have been a mixture of classic migraines with auras and hemiplegic migraines with or without auras. By the time I was 13 years old my migraines were frequent and severe. I always vomited and I would always become paralyzed on one side of my body.

 I have a memory of my mum taking me to see my gp as she ( the gp) needed to see me during one of my migraines to confirm the diagnosis. At this age I was several inches taller than my mother and probably around a stone heavier. I remember her dragging me along the road, how the hell she did it I will never know but she did. In the doctors surgery I was diagnosed with migraine and given a prescription for pizotifen / sanomigran a drug used to prevent migraines. The doctor also gave me a soluble pain killer and made me drink it there and then. Bad idea as I decorated the treatment room with an exorcist type vomit. It was then that the doctor informed me that I was also suffering with transient gastroparesis due to the migraine. She advised me that as soon as I got my aura warning me of an impending migraine attack I must take my pain medications, if I waited the pain killers wouldn’t work as for all intensive purposes my stomach would be on strike during the attack.

I am always amazed at how many Doctors and migraineurs that aren’t aware that your stomach becomes paralysed during an attack. It doesn’t seem to be very well known by either community, which is a dreadful shame as many sufferers could reduce the severity of their migraine if they took their pain medications as soon as the aura started. Obviously that only works if you get an aura, some people don’t.

Over the years my migraine pattern has changed. As a teenager they were frequent and severe. Even though at that point I had identified a number of triggers ; emotional stress, cola, oranges / orange juice, halls menthol sweets, lockets ( a type of lozenge for colds), scampi fries to name a few. As I grew older the frequency of the migraine attacks lessened. I could now go years without them. However when I did get an attack the migraines would be in clusters so I would have 2-4 in the space of a week, knocking me sideways.

I also outgrew my triggers, I still don’t cope well with menthol so avoid it, the only other trigger I have identified is emotional stress. From 2010 until 2012 I was migraine free. Unfortunately in 2012 I started on the medication fludrcortisone     (florinef) and the migraines came back in clusters. This was also a time of emotional stress which compounded the situation. When I stopped taking the fludrcortisone the migraines subsided but they were still more frequent than they had been in years.

I now manage to go several months between attacks. The last migraine I had was in November on my 40th birthday. It was a classic migraine with an aura. I’ve found with these type of migraines as long as I get my pain medications in quickly and can apply a hot water bottle to the back of my neck within an hour of having the aura I can limit the severity and length of the attack to just a couple of hours. On my birthday I ignored it, dosed myself up and tried to continue as if it wasn’t happening. I had a couple of hours where I felt pretty ropey but I made it out to my birthday lunch and had a few glasses of champagne for medicinal purposes!

With my hemiplegic migraines there is no escaping them. They will not be ignored, I just have to ride out the storm. Its the nausea and vomiting I find hard to deal with during these attacks plus the pain is just off the chart. They leave me depleted of energy for days afterwards with several severe headaches following afterwards. Thankfully I spoke to my gp on Wednesday as the migraine was starting to subside and was prescribed three types of suppositories. Two kinds of pain killers and one anti emetic as I can not hold anything down during one of these attacks. So if you are like me during a migraine it maybe worth talking to your doctor about being prescribed suppositories rather than oral medications that will not be digested if you do manage to keep them down.

With all things medical that I discuss on my blog – I am not a doctor, what works for me may not work for you. Also if your migraines change or increase in intensity then you need to seek urgent medical advice. What you think is a migraine could be a whole host of other lot less pleasant conditions such as a brain bleed, a stroke or meningitis none of which should be ignored.

And yes Nurse Frankie was glued to my side during the episode in case any of you were wondering!

I should have said glued to my feet as he kept lying on them to ensure I didn’t go anywhere!