Bugger!

Well I didn't think I could hate 2020 anymore than I did last week and bugger me it had some more treats in store for me. Sometimes even I find it hard to believe the stunts my body pulls.

I managed to have my first migraine with a proper full blown aura in 6 years on Friday morning which takes some beating. I was reading the newspaper online when I became aware of the fact that my left eye was struggling to see the words on the screen, in fact words were missing and the screen seemed ultra bright. I knew straight away that it was probably a migraine but I thought, it has been so long. Maybe it is the sun shining through the window hitting the screen and that's why I can't see? I struggled on for a few more minutes the weird thing was when I was looking at the screen my vision was fine. Then I looked across at Mr Myasthenia Kid and half his face was missing. At that point there was no mistaking this was a good old fashioned migraine. The last one of this type I had on my 40th Birthday how's that for timing?

Hubby immediately sprang into action and got my migraine grab bag so I could take all my meds and then go back to bed. I absolutely hate the aura stage of a migraine which for me can last up to an hour before the headache begins. During that hour the visual disturbance just gets worse and worse, even with my eyes closed in a dark room. There is no escape from it and it leaves me feeling terribly disorientated. I am so grateful to have finally been prescribed sumatriptan, it is my wonder drug as it really does just halt the migraine in its tracks. Some days I feel as rough as a badgers arse, for those of you outside the UK this is what a badgers arse looks like. Other days I may feel a wee bit groggy but after a few hours I can do some bits and pieces and I am not totally wiping out a day. It really has been life changing. However the number of migraines I have been having lately has been averaging around 2 a week and I am heartily sick of having them. Of course it is now leading up to the window that always means migraine time the 18-22nd of each month. I am hoping ( god loves my optimism) that this month I wont get it but who knows? I have had more than my fair share these last 4 weeks.

So that was Friday, which was then followed by an eventful Saturday. About an hour after I got up on Saturday a nice bout of Vertigo started. The room did one spin every so often and when I walked / stumbled really anywhere it felt like I was on a boat. Thankfully I always have a stash of meds nearby for this and to be fair it has been quite a while since I had the spins. I sat down with a coffee and tried to relax and let the medication do its thing. After a while I was bored so I decided to go and sit out in the garden. Big mistake as I went arse over tit over a plant pot ( concrete ) that Mr Myasthenia Kid has so helpfully left in the middle of the patio. Had it been a normal day I may have been able to right myself but with vertigo? Not a fucking hope - apologies for the language today it is just happening. So I tumbled across the patio all the time trying to right myself without success. I realised at this point that I was going to end up crashing through the fence and falling 4ft down onto the patio in front of our shed if I didn't stop staggering, so with the fake turf on top of the gravel I aimed my dive onto that figuring it would hurt a lot less than landing on the gravel.

Gracefully I hit the deck and if you believe that, you will believe anything. Immediately I was in a world of pain, both wrists, my left shoulder, my left knee, my left buttock and all along the left side of my back.

The only reason I didn't scream obscenities out loud was because the neighbours children were playing in the garden and I didn't want to teach them anymore bad language than I had already. Most of it was aimed at Mr Myasthenia Kid for being so stupid as to leave a bloody plant pot right in front of the patio doors! When he knows my vision is a bit dodgy and I can lose the sight in one eye if my ptosis strikes and I can't open my right eye.

So all my plans of sewing etc went out the window. Instead I spent the day dosing myself up on pain killers and sitting on hot water bottles. My ankle blew up like a balloon, i had to take my slipper boots off because it got so large it was starting to feel constricted. I was bloody furious because I needn't have fallen and I hate feeling vulnerable like that. I forgot to say the minute I landed on the artificial grass Dembe came rushing over showering me in kisses checking I was ok. Initially he wouldn't let me get up until he had checked that I wasn't seriously hurt.

Sunday was spent doing crochet very slowly as my wrists were still throbbing from the fall and my left leg was elevated all day due to the swelling. I still hurt all over but at least nothing was broken. 

Thankfully the vertigo was gone by Sunday morning, my leak is still causing me problems. It is still there and some days the head pain is worse than ever. I am still attempting to pace myself by lying down every few hours but it is difficult when I get absorbed in something to remember to. I only remember when my head starts feeling like it is crushed in a vice and all screens seem to be burning the back of my retinas.

As I am the worlds worst person at pacing myself due to the fact that giving up work due to my disabilities has made me feel like I contribute nothing at all to society, I push myself constantly beyond what is sensible and then end up paying for my stupidity. I feel that everything I do has to be better than everyone else so that people don't feel sorry for me and that I don't look weak or vulnerable. The fact that the falls and faints have become much more regular occurrences is making me feel very vulnerable and it is doing a number on my mental health. I have always struggled with never ever feeling anything I do is good enough and probably also a bit of impostor syndrome (find out more here. ) People can tell me that what I have sewn or embroidered is the best thing ever, my blog could be awarded a Nobel prize for literature but I would still be waiting for one person to say that my work is shit. It is hard to live with the constant fear that people will discover that what you do is actually crap. Add in physical disabilities and you have a wonderful mixture of weird ideas running through your head, not only are you not good enough creatively but you can't even do the stuff normal people do. It makes you feel less than. Which is why I probably do push myself too hard to prove I am worthy of my place within society.

Word for this week is Bugger!

A lovely photo of Dembe to lift your spirits

Bouncing back.....I wish

Well it seems 2016 wants to emulate the crapfest that was 2015, only with its own individual twist on things. In the last week I have managed to have three different courses of antibiotics, a nasty allergic reaction to one of the antibiotics, an abscess the size of a quails egg and a uti (urinary tract infection for the uninitiated). Not bad going really seeing though it is only just February.

I have spoken in the past about how I suffer from the chronic skin condition Hidradenitis Suppurativa Link. It's a condition that produces painful abscesses on the body mainly under the breasts, on the buttocks and groin. Yeah I know it's a laugh a minute. No one knows what causes it and it is very common amongst type 1 diabetics of which I am not. So my case is even more peculiar. Thankfully I know I am not alone dealing with this and have actually found out that I have a few friends who suffer with this. We tend to suffer in silence because who wants to admit that they have an abscess in their groin or under their bust ? It's not a great conversation starter. The word abscess alone either conjures up images of IV drug users or bad personal hygiene. Personal hygiene has absolutely nothing to do with it, I have washed in hibiscrub and still developed enormous abscesses.

A week ago last Monday I woke up with an abscess in the crease of my thigh, the top of my leg, how can I describe this? Between your thigh and your lady or boy bits. A medical term no man's land. It was huge and had come out of nowhere. On a scale of abscesses I have had before this was f**king huge, the pain actually woke me up. The pain wasn't contained to the site of the abscess it also was creeping down my thigh. No position was comfortable and as the morning went on the bigger it grew. By the time it had reached 10am the abscess had hit the size of a quails egg hanging down from my thigh. If you are curious to see the size of a Quails egg click this Link. Now obviously a Quails egg isn't that big but it feels bloody ginormous when it is hanging from the top of your leg. I was so uncomfortable that I had to borrow a pair of my husbands trunk style boxer shorts as my own knickers were lying right across the abscess.

By 10:30am I was lying on my bed crying, I was going to have to ring the doctor's surgery. Due to having chronic health conditions I hate running the gauntlet of the doctors receptionists. A number of them know me now and when I ask to speak to my own gp have no problem with asking him to ring me. However there are a number of newer staff who haven't had the pleasure of meeting me and stick with the line Dr XXX isn't the duty doctor today, which is exactly what I got. Thankfully my doctor must have been having a look at the list of calls needing to be made and he rang me back in 30 minutes.

I explained to him it was the worst one I had ever experienced. I forgot to mention that over the Christmas period I had been dealing with so many small abscesses I actually lost count. This is what is known as a HS flare, it is one of the most painful things I have ever had to endure. I am no baby when it comes to pain having endured a lumbar puncture and the removal of the side of big toe nail with a local anaesthetic that was no longer working. The only time I am a wimp is at the dentist. So I was prescribed the antibiotic Flucloxacillin which I have taken for years and had no problems with.....

I was lucky that my abscess burst the very next day, it was utterly disgusting, enough said. With the pressure gone the pain went. I was still feeling pretty rotten so I continued to take the seven-day course of antibiotics to avoid a secondary infection and the need for this abscess to be drained at the hospital. 

Wednesday I woke up at 1am and took my antibiotic. About an hour later my face felt very itchy. I thought nothing of it, sometimes I get very itchy skin. With it being my face I tried not to scratch but as the morning went on it was becoming more and more uncomfortable. At 7:30am (having not been back to sleep) I took my next antibiotic within 30 minutes my face had erupted in small bumps and was bright red looking like I had been sun burnt. As I waited for the doctor's surgery to open I could see that the redness was no longer confined to my face, it was now spreading down my neck and onto my chest. I knew having had these kinds of reactions before it was imperative that I took some antihistamine to slow the reaction down. I also very naughtily applied a weak steroid cream to my neck, face and chest. The itching was hitting an unbearable level and when it didn't itch it was very sore.

Its not a great photo but you can see how nice and blotchy I am.

In this picture it has calmed down a little but you can see how bumpy the skin on my face has become.

I was gutted by this allergic reaction as it means there is now another antibiotic I can't take. Flucloxacillin has been my go to for years as I have had so many reactions in the past. The pool of antibiotics that I can take safely is now little more than a puddle. It is starting to get quite dangerous. As I still needed to be on antibiotics to ensure the abscess was no more I was placed on Clindamycin. I had no allergic reaction with Clindamycin but the side effects of this medication were just too much. I lasted three days, I hate throwing in the towel with antibiotics but there are only so many bouts of explosive diarrhoea a girl can take and I can't run that fast or at all really.

My face was slowly starting to subside and was no longer itchy, just very, very dry where the skin was starting to come off. I have had this reaction before with CT contrast dye so I knew what I was in for. At least this time I knew to moisturise like crazy, Vaseline has become a good friend as I plaster my face in it before I go to bed. I had a couple of reasonable days at the end of last week other than a disturbing symptom, I kept losing my central vision for a few seconds at a time. A black / grey dot kept appearing and then would disappear. I wont lie I was slightly concerned with Ehlers Danlos Syndrome there is a remote possibility that my retinas could detach. I decided that come Monday I would have to see my gp and discuss this with him.

On Sunday morning the dot kept appearing then disappearing. It was annoying me so much I mentioned it to my husband in a totally casual manner so as not to alarm him. Only an hour later I was struck down with a classic migraine, I had just been experiencing the longest prodrome I had ever experienced. For more information on the four stages of migraine click this Link. This was a classic migraine with aura, nausea and a lot of pain. The rest of Sunday was a right off and Monday wasn't much better as I dealt with the after effects of the migraine. I hadn't actually had a "proper" full on classic migraine since 1st November 2013 (my 40th birthday), thankfully that day the headache part of the migraine wasn't too bad either that or it was masked by the copious amounts of alcohol I consumed. Having a migraine out of the blue like this was a shock, I normally only get them when I am stressed or over excited. I am hoping that this was a one off and that they won't be coming back on a more regular basis.

By Tuesday I was still feeling rotten but I quickly realised that I had developed a UTI, cue more antibiotics. I also woke up that morning with a cracking bout of ptosis. Thankfully this went away within 35 minutes of taking mestinon. However it shows you how low everything has taken me. Its going to take me a while to bounce back.

It has taken me years to feel brave enough to post pictures of myself with ptosis. If you look very carefully you can see that my right pupil has also drifted and is no longer in alignment with the left pupil.

So it's now Wednesday (3rd Feb) the day before my blog is published, by the seat of my pants I am getting the piece together. Today has been the first day I have felt well enough or had the concentration span long enough to write anything. I am hoping that this isn't the start of another year of continued shitty health. As I said at the beginning of this post 2015 was a crapfest from the 26th February onwards I was constantly fighting to stay healthy. I lost, badly, I ended up being diagnosed with Meniere's Disease in September and my prolactin levels decided to rise on their own accord making me hungry, fat and tired. I was so glad to see the back of 2015, I honestly thought this year I would be on top of  the things that made 2015 so bloody awful. There was nothing now that I couldn't handle. 

I spent an hour in bed yesterday throwing a pity party for one wondering why the hell this was happening to me again? The answer always came back why the hell not? I climbed out of my bed after my mini tantrum and watched a film with hubby. Nothing was to be gained by lying in bed all day other than a really sore back. I refuse to give in and will push for as long and as hard as I can to ensure I control as much of my life as possible and not the motley crew of chronic health conditions I now have.

So to cheer everyone up here are some pictures of my hounds. They love me whatever is going on with my body!

Mollie

Frankie

Willow

Finally how I look makeup free without an allergic reaction going on.

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!