My last post was published on the 10th of January when I felt like my whole world had caved in. The last few weeks have been very hard, I miss Frankie and Mollie so much that my heart aches. There has not been a day that has gone by where I haven’t wept with the pain of losing them as suddenly as we did. To lose two dogs in 7 days is something I wouldn’t wish on my worst enemy. I wouldn’t have got through it without hubby by my side. In fact I would have probably given up completely had he not been here.
We often joke in the EDS community that we are the human equivalents of Barometers. Any sudden changes in air pressure and you’ll find us suffering with a myriad of problems such as migraines, excessive joint subluxations (partial dislocations), dislocations, joint and muscle pain. This week I feel like I have had them all.
Monday started with a bang, I felt like someone had smashed me in the face with a shovel. This lead to me spending most of the morning lying in a darkened room. Until I suddenly had a brain wave and decided to see if putting a soft neck collar on would help at all. I have always held a deep suspicion that my migraines are triggered by my neck being hypermobile, I get a lot of pain and stiffness in my neck overnight. I always wake up with a migraine, very rarely do they start when I am up and about during the day. Within minutes of putting the collar on my head pain had reduced by half. Within two hours I was pain free but exhausted and still feeling sick. However anything was better than having the head pain.
Tuesday started on waking with a gnawing pain in my coccyx – right between my bum cheeks to be honest, hence why there are no photos! I have had massive problems with my coccyx this year after slipping on the snow and ice back in March. At the time I was much more worried about my head as I managed to crack it on the back door step. The lasting injury has been to my coccyx, which has resulted in me having to buy special cushions to sit on and to lie down in the lounge whenever I can to take the pressure off. I’ve lost 2 ½ stone over the year and you’d think that my joint pain would be getting easier but it isn’t. The coccyx pain is very uncomfortable, Tuesday it joined in with severe lower back pain which lead to me giving up and going to bed a 4pm. Only after applying my Tens machine for 4 hours did I have any notion of relief. It really was exceptionally painful and made me feel sick. No matter what pain medications I took the pain remained causing my buttocks and the backs of my thighs to spasm. I will be honest I really didn’t know what on earth to do with myself. It wasn’t even particularly stormy here yesterday just a bit gusty but obviously the weather and the air pressure were drastically different to the stable weather – but way too hot in the summer.
Today (Wednesday) the UK is being battered by another storm and my body feels like it spent the night being battered by a shovel. Since waking various parts of my body have been covered with a hot water bottles, with very little effect other than to make me sweat a lot as despite the fact the weather is very windy outside the temperature is very warm.My body is overheating constantly at the moment which is leading to me dripping with sweat at the drop of a hat. Either that or I have hot the menopause! So what hurts today? Today as most days I have pain in my lower spine and coccyx, my fingers are swollen, stiff and sore. My ribs feel like someone decided to attack me with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a
with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the constant waking up last night to take more pain relief. This is not a good day but I have been expecting a run of bad days after having a reasonable week last week. It’s the way it goes plus add in a few storms and my body reacts badly to the change in air pressure.
I forgot to mention that my shoulders are slipping in and out of their sockets, making a terrific crunching sound as they do. Today nothing other than just surviving will be done. When I say just surviving I mean lying on the sofa hoping at some point the pain relief I have taken kicks in. There will be no enjoying myself, doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be followed by several if not more bad. Which is why when its good ( when I say good I mean better than a bad day) I tend to cram as much in as I can.
I’m sick of this pain, especially when it’s like this and no painkillers touch it. It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing pain that escalates as the day progresses. Sometimes it takes my breath away, it makes me miserable and snappy. I hate the way it can completely change my personality from laid back and kind to nasty and angry at the world. Unfortunately those closest to me bear the brunt of it, with me losing my temper very easily. A technique I have learnt to avoid me lashing out is to just go quiet and not speak. That way I can be horrible to those I love the most.
Thursday brings more storms and a trip to see my hospital consultant which is more than an hour away by car. It’s a crack of dawn appointment as well so 90 minutes after this blog post is published I will be on the road. I will have had to get up at around 4am so that I can pace myself whilst getting washed and dressed. I am not looking forward to using my wheelchair as sitting upright at the moment is so painful, added in the 2 hour car journey (there and back) and I will be wracked with pain….again.
I do have a lot to discuss with my consultant, I haven’t seen him since March, it’s a necessary evil – he’s not evil he’s lovely, just the journey is torturous. I have developed numerous issues since I saw him last and I need to get to the bottom of them. One of them is the possibility that I have got Sjogren’s Syndrome ( I have had dry eyes for years but the eye drops are no longer working, my mouth is dry so I am getting numerous cavities and my tongue is sticking to the roof of my mouth when I talk). I need this to be looked at as my eyes are just so painful and with my pathological hatred of the Dentist I need the cavities to stop.More information on Sjogrens syndrome here.
This is such a down beat post and for that I am sorry. I had such a lovely week last week seeing friends and managing to make some bits and pieces.
The Christmas wreaths had been half made since August so I managed to finish those by adding hanging loops and bows.
I also made a number of Travis bags.
If last week was a weird week I haven’t got a clue what this one should be called! I had more vertigo, a migraine from hell, so bad that Mr Myasthenia Kid had to take the day off from work to look after me – more about that later and I can’t share any of my sewing makes over the last few days as they are all birthday presents for friends between 23rd June and the end of August. A little frustrating when I am so pleased with all of them, The good news is that my sewing job list on my phone for the months of May and June have reduced dramatically!
As I wrote in my last blog post I attended a course last Wednesday regarding how to use my overlocker. I was so excited about the course and I hate to say it but it was a real let down. It was everything a teaching session shouldn’t be. In a previous lifetime (1996-2005) I held the position of Training Manager at my place of employment. I was responsible for all the training that took place for the 350 plus staff we employed at the time. Not only that I was also sent to various other locations throughout the south-west to teach other Training Managers (they were also sent to work with me to get an understanding of their role) and to teach staff for new store openings. I loved the job and I am not afraid to say that I was bloody good at it. It broke my heart when head office in its wisdom decided to get rid of the role. Training quality immediately plummeted – in my workplace. I have been sorely tempted over the last few years to do a freedom of information request to see how many court cases they have had since removing the Training Manager role.
So with nearly ten years of teaching under my belt, I know that people have varied learning styles. Some learn by watching something and then having a go, some people learn by reading a manual and some people learn by a mixture of those two. Unfortunately the course seemed to be mainly the us the students sat at our machine with the trainer talking at us. So bored was I that I actually got my phone out and started to look at Facebook – discreetly. I didn’t want to be rude but I had to do something to keep myself awake as the stairs getting up to the classroom had nearly killed me. Oxygen was almost required – this was not suitable for the disabled sewist.
The course had been billed as getting to know your machine – I’d had mine since 13th April so rather than being terrified I had dived straight in. It became clear talking to the other 7 pupils ( excluding my mum, yes 9 people to one tutor how on earth could all of us see anything when she demonstrated at a machine?) that they had never even opened the boxes that their overlockers had come in, that possibly mum and I were too advanced for this course. I obviously wound the tutor up when after she dramatically cut all 4 threads on my overlocker and asked me to re-thread it and I had it done in less than 5 minutes. She told me off for using my machine when I was checking that it was chaining (working properly). She didn’t realise that I had threaded it and actually knew a little about what I was doing. The course went downhill from there.
Three people’s machines broke during the day and not once did the tutor offer any support, instead there were sarcastic comments dressed up as imparting information that certain brands of machines were basically crap and It concerned me that someone who claimed to know so much about brands was unaware that Elna and Janome are the same company. One lady went downstairs and bought a new machine but still this woman ploughed on and didn’t recap with the lady what she had missed. The same happened when my mum’s machine broke.
By the end of the day I could barely maintain a civil composure, I was threading my mum’s machine to ensure that she had a working machine when we left the course – thankfully her machine was repaired there and then by the shop owners – I can’t fault them at all. I love their shop and they have always been lovely which is why I am not naming the location of the class as I wouldn’t want to damage their reputation, when this was someone who obviously comes in and works for the. The teacher was demanding yet again mum and I stand in front of a machine that we wouldn’t have a clear view of – when both of us have mobility issues which were obvious due to the mobility aids we were using. I practically hissed that I was beyond tired as was my mother and having a working machine before leaving the shop was slightly more important than looking at the backs of people’s heads. I then let her look at the back of mine as I got on with threading mum’s machine – something the tutor should have done when she was told mum was having issues seeing properly due to the light coming in through the window.
All I can say is thank fuck I didn’t pay full price for that class. I still feel ripped off knowing I paid £27 for it. I will be honest yes I learned some bits and pieces but not £27 worth.
Thursday was a complete right off as at 2am I woke up with a migraine, it was hideous. I couldn’t stop being sick and by the time Jamie found me lying in the dark at 9am I could barely speak. By 2pm I was starting to come around but I was just completely drained. However my back would not put up with me lying in bed any longer so I forced myself downstairs.
I was wiped out by the migraine for a good couple of days but I did get some sewing done. I managed to make a start on my floating triangle quilt, so the week wasn’t a complete right off. I have started taking pizotifen again in the hope that it prevents more migraines in the future or if not it at least reduces the intensity. I can’t cope with that again nothing stops the pain or the sickness.
My quilt pieces, this is as far as I have got as the rest of my time has been taken up making birthday presents,
Now all that is left to do is to join them all together in the right order!
I am in the throes of yet another migraine, I knew it was coming as my Todd Syndrome / Alice in Wonderland syndrome stuff has been going nuts. Walls moving, feeling like I am falling when stood up and feeling like I am sinking into the floor. The symptoms ramp up and become more and more bizarre the closer I get to the migraine. Yesterday they were particularly bad. So it was no surprise to me when I woke up in the midst of another attack. Why they are more frequent at the moment I don’t know but they are very sinus based which maybe because the cold I was suffering with has now turned to hayfever. It really has been a box of delights the last few months my health.
If you would like to read more about Todds Syndrome / Alice in Wonderland Syndrome please click here
So I will just share with you some photos of my latest makes, another piggy and three tops. I am part way through making myself a kimono, it needs hemmed and the sleeves taken up but I am happy with it. As its only part completed there is no photo.
I was really proud of this one as it’s a much better looking pig and finish than the first two. I was immensely proud when the lady who designed the pigs for Simply Sewing Magazine and Sewing Quarter commented on my post on Instagram.
I also made myself three tops over the last week, following the same pattern that I devised myself. I am really pleased as I made a major mistake when I ordered all this material. I believed I was ordering by the metre when in fact it was by the half metre. I thought I had ordered 2 metres of each fabric only to find out on arrival it was just a metre of each. By moving the fabric around and being creative I managed to get a top out of each metre, I am not small so this was a big achievement.
I managed to take this photo of Frankie yesterday so thought I would throw it in for good luck.
I’ll be honest no one has ever told me that I don’t look sick. I am normally told “you’re looking well”. I did get quite close to being told “but you don’t look sick” one day last week and it really irritated me. I wonder how someone can judge from a couple of photo’s if I look sick or not?
The problem is most people don’t know me well enough to be able to know when I am looking sick with or without makeup. They only “know” me through the internet, they only see the photographs that I am happy to post on my social media feeds. I’m hardly going to post hideous photographs of myself that will be out there for all eternity. Although to be fair over the years I have posted some shockers! My family can spot when I am really sick a mile off and so can I but when you are naturally very pale the difference between normal and feeling terrible can be very subtle. When I am very sick the colour drains from my face or I can look quite yellowy. Unless you have seen this on a regular basis in person, it can be very difficult to spot. So it does get frustrating when people see me or photographs of me and say “you’re looking well”, when inside I feel truly dreadful.
I have decided over the last few days to start wearing makeup again in an effort to feel more human. I am fed up with the sick pasty white face staring back at me when I look in the mirror. I also posted the photo’s on my The Myasthenia Kid facebook page and my Instagram account unfortunately by doing so I have inadvertently fallen foul of those who claim you can’t look good whilst feeling like your head is going to explode.
For two days last week I had back to back migraines. Both occurred on days that I had put on makeup. Clearly my applying makeup had nothing to do with the migraines, it was just really shitty timing. By posting these photos I fell foul of the chronic illness police (CIP) as when you are sick you must never ever smile, pose for photos or look like you are enjoying yourself. It’s just not on and you’re letting the side down when you do. There is a really judgemental side to some of the people within the Chronic illness community however it isn’t solely confined to this community. It seems many online groups seem to hold their members to standards higher than are humanly possible. This is the picture which exposed me to the wrath of the CIP.
Apparently you are only allowed to look like this (photographs below) when you are chronically sick
The thing is I don’t want to look like that all the time to fulfil society’s expectations of long term chronic illness. Sometimes I like to remind myself of the old me. The person who wouldn’t step outside the house without makeup on. Who dressed nicely instead of wearing what is comfortable, the majority of my days are spent in lounge pants. Just occasionally I like to remind myself that I can still be the old me just a massively revised version. I won’t apologise for wanting to look nice or for getting dressed. Its up to the individual how they live their lives and present themselves to the outside world. If you want to or have to wear pj’s for the rest of your life I will defend your right to do so. However I expect you to have my back also and not judge me because you don’t think I look sick enough.
Taking a few minutes to put some makeup on lifts my mood, low moods are something I suffer with on a regular basis especially when I have been enduring periods of social isolation. Its very easy to sit in judgement of someone when you haven’t walked a mile in their shoes. For days on end the only person I see is my husband or the postman. The social isolation can really play havoc with your mental state, so anything that lifts my mood in my book is a bonus. I have spent much of the last 9 years not caring about my appearance and I know now that has spoken volumes about my low mood.
There are days when I don’t have the energy to have a shower or get dressed but on the days I can I want to feel good. I shouldn’t have to justify that to anyone, let alone others within the chronic illness community. To have someone doubt the validity of my illness due to the fact that they perceived I looked well and had makeup on was a massive slap in the face. Anyone who actually really knows me, you know in the real world would tell you how deathly pale I was looking, how much my eyelids were drooping etc. Things that you wouldn’t notice because you don’t know me.
I suppose I only have myself to blame for posting photographs online for my followers to see. I have been posting many more of them this year as I have such a distorted view of myself that I need a kind of over exposure therapy to stop me focusing on all my perceived faults. It hasn’t been vanity or fishing for people to pay me compliments. I don’t believe a word anyone says when they compliment me anyway online or in the real world. My body issues have been around for many years so a few words on a screen aren’t going to change my mind. Sometimes I do dare to think I look pretty but those thoughts are fleeting because as I scrutinise the photograph I find fault with something. The faults I find have nothing to do with looking sick enough and more to do with the ridiculously high standards I hold myself to.
It’s a double edged sword having an online presence, when I post pictures of myself or my dogs I get higher viewing figures across all the platforms I use. If I didn’t “market” my blog I wouldn’t get any followers or regular readers. I am not prepared to hide away just because one person doesn’t think I look sick enough. I won’t lie it hurt to be judged in this way, this person has made an assumption based on one photo. If they’d bothered to read my blog they may have more of an understanding of what life is like for me, well the bits I am prepared to share anyway. I never thought I would hear the words or close to them “But You Don’t Look Sick” uttered by a member of the chronic illness gang and I hope I never do again.
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.
It’s 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!
Finally how I look makeup free without an allergic reaction going on.