H.S

So last week I wrote about how poorly I have felt over the last week to two weeks and I have finally got to the bottom ( no pun intended ) of what has been causing this dip in my health – well I think.

I have several chronic conditions some rare some rarely diagnosed and one of them is a skin condition called Hidradenitis suppurativa . I don’t talk about it a lot mainly because of the embarrassment caused and the judgement you can get from ignorant people. When you say you regularly get abscesses people either assume you are a junkie or your personal hygiene is lacking. I can assure you none of these are true. If you read the link above you will see it is caused or connected to the sweat glands. The weird thing that separates HS abscesses from “normal” abscesses is the fact that when swabs are taken from a HS abscess nothing grows in the petri dish. That is what separates it from standard abscesses which are normally caused by a staph infection. 

The problem is that with HS it is very common for you to get a secondary infection like cellulitis. And just because HS doesn’t have any nasty bugs contained within it doesn’t mean the bloody things hurt any less. From Sunday into Monday this week  I developed a large  abscess which immediately also turned into cellulitis. It was reasonably sore, I have had lots of abscesses in my time and the majority of them have been a lot more painful than this one. HS doesn’t just give you abscesses it makes you feel very poorly when you are in the middle of a flare up. I can run a temperature which is unusual for me, get whole body aches like I am coming down with the flu. I feel very run down and tired. With an abscess brewing this has obviously had a knock on effect with the rest of my conditions and explains completely why the last two weeks have been so difficult. Just by way of explanation its not uncommon for me to have abscesses that I have no knowledge of being there until they rupture. It really just depends where they form and how close they are to nerves and lymph nodes. Sometimes the smallest ones can be the most painful, it really is just the luck of the draw.

I have been quite lucky with my HS it has never really gone further than stage 2, I have never had to be hospitalised with it, I’ve only ever had one lanced at A&E many, many years ago. I have friends who have endured skin grafts in an attempt to stop the disease progression and multiple hospital admissions and operations to drain them.  Last year was the closest I got to be admitted to hospital when one the size of a hens egg developed over a few days. I was waiting for my doctors surgery to ring me back as I was going to beg them to lance it, when it ruptured as I sat down on the toilet. The location was my bikini line inner thigh. I sat there for a full 30 minutes whilst this just drained and drained. The relief was instant as this one had prevented me from wearing clothes on my bottom half and from walking. It then continued to drain for the next 7 days and required dressing changes at least 4 times a day. I have never seen anything like it. I really hope I never see anything like it again.

Now all of that may seem pretty disgusting and I would have to agree with you. You have no idea how much courage it has taken to even talk about this horrid condition. For me though it gets worse as I really don’t tolerate the antibiotics used for this condition. I can’t take doxycycline as I can’t keep it down I will projectile vomit within 30 minutes of taking it. I don’t do particularly well on any of the tetracycline’s . I end up having to take Flucloxacillan  which a) give me rampant diarrhoea so I end up eating Loperimide (imodium) like sweets to stop it. I think its because they contain a hefty wack of lactose which I don’t tolerate and b)  I can end up having an allergic reaction to it – facial rash. So it’s not even plain sailing when I do get the antibiotics. So on top of feeling crap from the abscess I have the side effects from the course of antibiotics to contend with. Oh and I forgot to mention the non stop nausea I can get with these as well and the burnt oesophagus where they get stuck in my throat due to swallowing issues caused by EDS.

I have had over 24 hours on the antibiotics now and the cellulitis has subsided. The abscess is still there, blind so will need some attention to draw it out. I have problems at the moment though as my skin has become very fragile and any adhesive dressings are removing a layer of skin with them. Making it too painful to apply my usual cure a dab of Vicks vapour rub and a mepore dressing. I am having to rely on heat alone.

The whole point of the post is to raise awareness of this condition. Since I was diagnosed in 2011 I have helped around a further 5 people get diagnosed and those people in turn have helped others get diagnosed. I was lucky that I switched surgeries and my new gp was on the ball. For the 12 years prior to that I had been fobbed off with antibiotics and no real help. I was made to feel ashamed and that it was something I was doing or not doing that was causing these flare ups. 

HS can occur pretty much anywhere on the body that has sweat glands. So if you are having continual flare ups of abscesses under your breasts, in your groin or armpits or on your bottom, anywhere don’t suffer in silence. Arm yourself with some information and ask your gp if they have heard of Hidradenitis Suppurativa. Being diagnosed won’t cure you, there is no cure but it may get you better treatment. When I have a flare up I just have to ring my doctors surgery and ask for antibiotics. I could push to see a dermatologist but I will admit I am too embarrassed and as I can manage most of the time myself, I just get on with it.

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Am I moaning?

I think I am going through what a lot of people with chronic illness / chronic pain go through where they wonder if they have turned into a bit of a moaner. Obviously a lot of us have pretty reasonable things to moan about but I am started to get paranoid that maybe I have crossed an invisible line from previously what was an acceptable level of moaning to an unacceptable level of moaning, for those whose lives aren’t blighted by chronic illness.

 

I usually say very little about my health on social media, its like my own dirty little secret that most days I am wracked with pain or have ptosis or feeling anxious or whatever the hell is going on that day. When I do post it’s usually because things are much worse than normal. I have posted a lot this summer about my health because things have been the worst they have been for a long time. The heat wave although helping my joint pain no end made my PoTs symptoms absolutely horrific. Every movement kicked off palpitations, my blood pressure was horrendously low in the 80/70 range most days. Leaving me feeling faint and exhausted. I could barely manage to walk some days. Many, many days were spent in bed feeling very sorry for myself. And do you know what? I get very angry  when I feel sorry for myself because I feel weak and vulnerable.

 

Regular readers will also know that my CSF Leak has come back, although it’s not at the level it was in 2016 I have had several days over the last few weeks where I have been unable to leave my bed because the pain is so intense. It makes me want to vomit. I described the pain to someone as feeling like both my eyeballs had been removed and dipped in acid then rammed back in the sockets. Whilst the back of my head feels like I am being beaten to death with a shovel. Now if you were experiencing those levels of pain do you not think, honestly that you may mention it once or twice? Or however many times that you want to. Because believe me when you are dealing with that kind of pain you just don’t care what people think.

 

Along with the pain the CSF leak brings I have also had some additional symptoms like vertigo that only goes away with lying flat. Losing my balance very easily and being unable to bend down / lean forward repeatedly as this is triggering the leak headache. As I say I am lucky it’s not as bad as it was in 2016 but it’s bad enough.

 

In the last few months I have also had my migraines return, I have ended up having to take amitriptyline every night as a migraine preventer. It’s kind of working since taking them at the start of July I have had one migraine. However my migraines have come back as if they are amped up on steroids, I have to lie in a darkened room, vomiting into my bedroom bin because I can’t get up.

 

Bizarrely I have also had my left big toe, nail fall off, out of nowhere. I had an intense amount of pain in my toe. It actually hurt to touch the nail. I lifted up the side of the nail ( I had both sides removed over ten years ago due to repeated ingrowing toenails) and the nail came off in my hand. It hurt but it didn’t hurt anywhere near as badly as it had done just before the nail came off.

 

Have I bored you yet? Because believe me I am bored with it. I feel like I am in a never-ending soap opera where shit keeps happening and I have no control over it. So yes I may have mentioned on social media a few times over the summer how fucking awful I am feeling and to be fair I haven’t even touched on about 50% of the health stuff that’s been going on of late. This is just the stuff I can think of off the top of my head.

 

Admitting you are sick on social media is a dangerous game, post happy cheerful stuff and you are judged to be not as sick as you make out. Post stuff about how fucking awful you feel and you’re moaning. You can’t win. I don’t want my life to revolve around my health conditions but there will be periods of time when it does because all I can do is just keep my head above water.  To feel that I can’t express what is going on in my life, when I can go weeks where the only person I see or talk to in the flesh is my husband, just seems cruel. It’s not that I want someone to talk to – and thank you to all those who have offered me a safe place to vent. It’s just sometimes even I don’t believe what is going on health wise. I don’t think I have ever been completely honest with anyone because there is always more than one thing going on with me. I always just give those closest to me the headline news not the full story.

 

Any way that’s me, I am bored with this subject already and if I am bored with it I have probably sent the rest of you to sleep also. Mr Myasthenia Kid has been on holiday the last two weeks ( well just over ). It’s the longest holiday he has taken in years. We’ve really enjoyed the time we have spent together. We’ve managed to work on a few projects together, which I first touched on in my blog post upcycling.

We had so much paint left that we decided to upcycle our lounge coffee table  taking it from this – those dots on it are from dog drool

To this

 

Jay did the lions share of work because I am just not physically able to. I did a small amount of painting, basically just catching the bits that he missed. We have painted the stripped pine with hard wax oil which means the wood is now water-resistant and has a lovely finish. It took several days to dry and for a while we were concerned that the top of the table felt very rough. However as the hard wax oil has dried its left a silky smooth surface.

 

Jamie’s work also got the thumbs up from John Scott and Jo Carter on the Sewing Quarter. I don’t think I have ever seen Jay so proud as when they both said how lovely the table looked. I am very proud of him as it was no mean feat sanding the table top down.

 

 

 

Not happy with doing  just the bedside cabinets, the lounge coffee table on bank holiday Monday 27th August 2018 he also painted our kitchen chairs. They look fabulous and make such a difference. And we still have paint left from the 750ml of Scotch Mist Frenchic Furniture paint.

 

I also got a shout out on the Sewing Quarter Saturday 25th August – cheers John xx

 

 

Sewing Secrets

I am officially one of the worlds worst secret keepers! How I have managed to keep the following items a secret over the last few weeks is beyond me. When I make something for someone I always want to give it to them immediately  or I accidentally let slip what it is. This time however I have been strong even though it has been incredibly hard.

 

A few times recently in blog posts I have said that I have been unable to share what I have been making that week due to it being a present. Thankfully I can now share with you my makes – which I am incredibly proud of as these two birthday girls have received their gifts.

 

Imogen will be 21 on 23rd June and is incredibly special to both me and Mr Myasthenia Kid. I discussed with him months ago what I would like to make for Imogen’s birthday and he was in full agreement. It took me a little while to source the material as I wanted all kinds of Unicorn fabric but I also wanted it in Pink and Grey so it wasn’t over the top girly.  The first item I made was a 20 inch square cushion cover in a Dresden Plate design

 

I had a bit of a nightmare with the cushion pad as although it was sold as a 20 inch cushion pad, it was actually a lot bigger. I, being a novice and idiot didn’t think to measure the cushion pad before I started making the cushion. I just presumed that if something was being sold as a 20 inch square cushion pad that is exactly what it would be.  So when I placed the cushion pad inside the cover it looked terrible – in fact stuffed sausage would be an accurate description. I was almost in tears as I had worked so hard. So I decided to measure my completed cushion cover and make my own cushion pad to fit it. I used my overlocker to do the edges of the cushion pad and the ladder stitched it closed once I had placed the stuffing inside. I took apart the bought cushion pad and ended up with two nice squares of white fabric and a little excess stuffing.

I also wanted to make Imogen a quilted patchwork Tote bag. I had already made one as a project in my subscription box was this exact thing and they had sent out 42 charm squares, lining and webbing for it to be completed. I had really enjoyed putting it together and couldn’t get over how much I was using the bag as it was so roomy yet so light weight. So I made my own charm squares and bought the webbing online andknocked up one for Imogen.

 

 

I scotch guarded both the cushion and the bag to help resist stains. Imogen can be a little clumsy the same way I can. I also gave washing and ironing instructions with each.

 

Last week on the spur of the moment I decided to add something extra to Imogen’s gift. I had been doing some redwork for my other friends gift but want to change it up a bit so I found a  unicorn design online, unfortunately there is no attribution for this work so I can’t give credit to the artist. I did change it up just slightly by putting a heart around it and not using the words that had been printed under the design. Here is the finished item

 

 

I have filled the inside of the cushion with a mixture of stuffing and dried lavender. It smells divine and the whole house smelt of it for a few hours as I filled several lavender pillows that day. I again provided washing instructions / care instructions just in case. Imogen was given her gifts on Saturday. The message she sent me after opening them was so lovely it made me cry, then Imogen’s mum Helen sent me a message in the evening which was really lovely too and that made me cry as well. It’s really nice when you have spent hours working on an item and the person is overwhelmed by it and is truly grateful for them.

 

My oldest Exmouth friend Ellie also has a birthday in June ( not until the 30th but with works schedules etc it was difficult to know when I would see her next) . I gave her the gifts I had made this morning.

 

This is a redwork lavender pillow. The redwork design was free from a site called https://www.birdbraindesigns.net/ which has some really lovely designs on there. I added my own embellishments to the design and also added Ellie’s initial to make it even more personal.

 

 

This has again been filled with stuffing and lavender. It’s a lovely small size that could be placed under a pillow or in a drawer to leave the scent of lavender behind. I have really enjoyed doing the redwork and have made several more as gifts for people. They take me several hours to do but I really enjoy sewing them. The stitches on these and the unicorn cushion are very basic just a running stitch, back-stitch and french knot are all that are needed to create something that can look quite stunning.

 

The second part of Ellie’s gift had been in the planning stages for ages. I was scared to start it as it was something different than I had ever made before. Plus I kept adding to the level of difficulty. It was the first time I had used the product Odecoat which ( depending on how much you use) can make something totally waterproof. I did enough to make the item water-resistant / stain resistant inside and out.  This was also the first time I had used my machines embroidery functions, I also used the memory function. I used an iron on stabiliser as well and proper embroidery thread. So it was a project of firsts. The pattern comes from Lucy Brennans blog / website https://www.charmaboutyou.com/ and the pattern is the #pieceofmepouch. It’s so stunning and once I had my head around it not difficult to make. I also have to say a massive thank you to Lucy who helped me out when I was being a bit dim and not understanding the pattern. Lucy is always so encouraging and supportive, I can’t thank her enough.

 

 

This week I also had to make my dads father’s day gift.This had been rattling around in my brain for weeks. I knew I wanted to make him something that was special and a one-off but what. I decided after gaining confidence making the piece of me pouch that I could use aspects of that and make my dad a bag to carry his (clean and empty) dog poo bags. I decided that I wanted curved edges on the top, that I wanted it to be 3D rather than 2D. I wanted a loop on the back so he could attach it to a belt and I also wanted a clip on it so that should he not be wearing a belt he could attach it to his belt loops. It also had to be small enough that it would impede his walking.

 

In my mind’s eye I could see exactly what I wanted so last Wednesday morning I sat with an empty bonio box ( dog biscuits)  in front of me and made my template. I used Odecoat again to help make the fabric water-resistant and to make it a bit stiffer. Also when I quilted it, I made the lines much closer together as I knew this would make it much more rigid. I am delighted with the way it’s turned out. Unfortunately due to a series of events out of both of our control I have been unable to give it to him as yet. I am pretty sure he doesn’t read my blog – mum does so I will be safe posting it here.

 

 

My last make of the week was this Owl stuffed toy for Jamie, it was his father’s day present from the dogs.

 

I absolutely adore this and it looks so cool on his bed! So far the dogs have left it alone.

 

* * *

Health wise I have been up and down. The heat had been causing a lot more ptosis than normal. I can really feel the mestinon wearing off after a few hours so I have had to been really strict with my dosing schedule. As once I get full-blown ptosis it can be difficult to shift.

 

I managed to have a large abscess develop under my breast due to the chronic skin condition Hidradenitis Suppurativa. Tuesday afternoon this decided to erupt and immediately go into cellulitis. My breast was so painful I couldn’t wear a bra. Thankfully the antibiotics had it  gone right down within 3 days.

 

A few days over this last week I have been woken up in the night in a lot of pain with a headache ( not a migraine) . I managed to work out on Sunday that it had been due to the position I had been holding my neck in whilst sewing. This was causing me pain through my collar-bone and deep into the soft tissue of my neck. This was then causing me to have awful headaches. I actually got very paranoid that my CSF leak was back, until Mr Myasthenia Kid pointed out that Leak headaches don’t start when you are lying down, they start on sitting up. This headache was with me whatever position I was in. It was not a leak headache more poor posture due to the heat making my muscles weaker than normal.

 

This morning I woke up with a bad pain under my sternum and a burning feeling in the back of my throat. I immediately worked out that when I had taken my 4am antibiotic (despite drinking loads) it had become stuck in my gullet. The tablet had dissolved in the back of my throat and burnt the tissue. I have been drinking gaviscon straight from the bottle and drinking only water to settle it down. It is feeling better than it was but there is still a burning pain. I have had issues with taking capsules for years due to problems with my swallowing. This just highlights again how much weaker this has become during the heat.

 

So although it may seem like I must be doing ok because I have sewn loads don’t let online appearances fool you. Everyday I am on the maximum amount of painkillers I can take as my back is so awful at the moment I have been having pins and needles in both legs. I’m either too hot and feeling faint or feeling cold thanks to my wonky Autonomic nervous system. I am just determined to do my best every day and be the best that I can be and let the creative juices flow. It is what makes me happy. It doesn’t take away all the shitty  health conditions I am living with every day of my life.

Moaning Again

It seems currently I can’t help myself, I appear to be moaning all the time in my blog posts. No outside observation has drawn my attention to this, it’s just I am starting to bore myself with it.

 

In January this year I went gluten-free after my mum’s diagnosis of Coeliacs Disease, four weeks ago I cut out dairy, which effectively means I am now vegan (after being vegetarian since birth). I am finding it relatively easy although in the second week I was craving cheese like mad. I did however work out it wasn’t the cheese I wanted but the salt it contained. I won’t lie I have found since giving up dairy the burning pain I had in the majority of my joints all day every day has gone. Which is great but the withdrawal from dairy has been hellish, for the first three days I had an almighty headache that I just couldn’t shift. Then recently I have had to endure the mother of all hidradenitis suppurativa flare ups, which has been incredibly uncomfortable and needing antibiotics to treat them.

 

I know its very early days in my whole food plant-based journey, 4 weeks is not enough to remove all signs of previous dairy consumption from my system but I really would have rather have the widespread burning pain in my joints daily than live with the pain my back is currently generating.

 

Monday I woke up with a trapped nerve which meant I could barely walk, the pain went from just above my bum, through my buttock, down my leg and into my foot. Most of Monday was spent chasing down pain levels that would have had me weeping with despair had I the energy levels. Tuesday it wasn’t too bad thankfully as for the first time in nearly a year I had a full head of highlights done. Luckily my hairdresser comes to the house but it’s still exhausting. By the time I got up from the chair I was left in severe pain in both arse cheeks. This was muscular in origin but it still really hurt. This morning I feel like I have been kicked by a horse in both bum cheeks, I have nerve pain running down my left leg and the whole of my pelvic girdle is on fire. Iliac crest pain for me is one of the worst types of pain I have to deal with as absolutely nothing stops it. I am currently sat on my heated throw hoping that once again a few hours of this will reduce the pain enough so that I can walk without pain.

 

Although I am sleeping better since the introduction of melatonin in January or maybe it was December (pain is just clouding my mind at the moment), currently I am exhausted from the minute I wake up. The quality of sleep is just not there and I do think my back is playing a major part in this. If it’s this painful whilst awake what the hell is it like when I am trying to sleep? I say trying because currently I am waking up every few hours feeling like parts of my body are being crushed. All this despite having a memory foam mattress and memory foam mattress topper. I feel groggy all the time during the day, like I have only just woken up. I hate not having a clear head as it feels like everything is a constant fight all the time. I can only describe it as feeling like I am hungover 24/7, which is disappointing when no alcohol is involved.

 

Even on days when my back is relatively ok by the evening the pain has returned, so there is no escape. When I can’t think clearly I don’t risk doing Pilates and injuring myself but it’s a vicious cycle. I need to start the Pilates to build up more core strength but I am paralysed by pain. At some point I will have to take the bull by the horns and just do it. But as I have said before part of my fear of doing the exercises is because that is how the leak started last year. I am also terrified of being stuck on the floor alone and having to call Jay out of work. I just wish I could wave a magic wand and have it all go away. I would then give everyone else a go on the magic wand and let them reap the benefits.

 

So I find myself moaning again, which I hate doing, especially when there are others out there much worse than me.

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.

 

 

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It’s not a great photo but you can see how nice and blotchy I am.

 

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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.

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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!

 

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Mollie

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Frankie

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Willow

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

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Hey its me!

Again I have been absent for quite a while. Unfortunately my health is on the slide and I have basically hardly been out of bed either through pain or through pre-syncope episodes. (pre-syncope medical term for starting to faint or feeling faint and not actually fainting).

 After a great deal of discussion hubs and I have decided that its time for me to contact the hospital Pots Dr as things aren’t getting any better and are in fact much worse than they have been for a long time. What he will actually be able to do is debatable but I can’t manage like this. Even standing for a minute or so is sending me into the spins. When I have been standing I am walking around like a drunk as I am so dizzy. I don’t know whether the chest infection has sparked this off or its just one of those things.

Even sitting here typing is making my head feel very strange, it feels like its moving to the left! How bizarre.

On top of all this I am also suffering with a bad HS flare which has been extremely painful. I currently have two abscesses on the go. One is actually healing so is less painful but I developed a new one yesterday and the process of sitting down is making me scream out loud! I can’t wait for it to pop to get some relief. It sounds disgusting and it is, but the relief when they pop is unbelievable.

Most of my days lately have been spent in bed watching DVD box sets or  listening to the radio. I listen to the radio once my vision starts to become double. It can be frustrating but I try and rise above it.

A friend asked me how do you manage to keep yourself in good spirits, to be honest I have no idea. At the moment I am angry and just feel like I can’t let this beat me. I haven’t had any why me days in the approx six week period when this downward spiral started. I am luckier than most people, I don’t have kids so I don’t have to force myself to get up and do things to look after them. I don’t have the worry about working as I haven’t worked since 2008 and to this day I can’t work out how I managed to keep going for so long with virtually zero support from the company. I can just be me and if it means being in bed all day so be it. I also have fantastic friends that text, visit or call which keeps me sane.

Over the last 6 weeks I have neglected my Internet friends for which I am sorry but I am hoping you will understand.

Peace and love xx

What do they call the collector of rare diseases?

So what do they call the collector of rare diseases? I just ask because it looks like I may have become one. OK so officially I have been diagnosed with two Postural Orthostatic Tachycardia – 21st Jan 2011, Hidradenitis Suppurativa 14th March 2011. I am still waiting for the EDS diagnosis and the neurologists to admit I have occular myasthenia gravis. I know hell may freeze over first but I can wait.

I have had the condition Hidradenitis Suppurativa or HS for years and I have been very lucky as the disease has always stayed in stage one. Its a disease that people wont talk about due to the shame associated with it. So I am going to talk about it as its painful and has nothing what so ever to do with the sufferers personal hygiene and its not contagious.

HS is a chronic and debilitating skin disease that without treatment will only get worse. The disease is treatable not curable. Its classed as an orphan disease as so little research is being done on it anywhere in the world. Its estimated 1% of the worlds population have it, however it is believed to be massively under diagnosed due to the shame people feel.

HS causes abscesses in the groin, between the buttocks, under the breasts and in the armpits. Basically anywhere the skin folds and where there are certain sweat glands. At its very worst people can be dealing with operations and skin grafts to get rid of the multiple abscesses. For me it means one or two abscesses on the go at anyone time with lots of scarring from previous abscesses. I get it everywhere except my armpits.

I know the shame as its a condition I have never discussed outside my family. No one wants to tell their friends that they are in agony with an abscess that has suddenly appeared on their labia.(yep they pop up in the most inconvenient of places) The pain can be so bad that you can barely walk. The only relief you get is when it finally pops, but then you have to deal with the smell of the discharge from the abscess and the awful realisation that the bloody thing will probably be back in a month or so. When the abscess does pop it leaves behind a hole which doesn’t heal, so not only are you left with purple angry scarring but holes as well that get infected. Plus the abscesses can drain for ages before they eventually start to heal.

I will never be able to go swimming again due to the mess it has left on my thighs in the last year. I was due for a smear last year but have been too ashamed to go due to the state of the “area”. If I don’t want to see it why should I put a practice nurse through it? People say to me that the nurses have seen it all before I want to scream Really?  Because I actually don’t care as its my bits we are talking about!!!

I spent ten years being fobbed off with antibiotics and being told I was just unlucky to get these abscesses. I was tested for diabetes. Just over a week ago I went to see my new Dr – Dr J and he took a swab of the discharge. I rang him yesterday to tell him the antibiotics he had prescribed had done nothing. He told me he believed I had HS due to the fact the swab was basically sterile – a normal one from a normal non HS abscess would be filled with bacteria that would rapidly multiply on a petrie dish in the lab. HS abscesses are almost sterile – although they are prone to secondary infection due to the fact that they stay open and leak for ages before healing. (I know I am currently dealing with one like this).

I couldn’t believe that I had a name for what I had been suffering with ! Plus from what I have found out its worse with stress – that’s true as this flare has ramped up since hubs accident.

So changing Dr’s has been very good for me already. I just need to find out what they call a collector of rare diseases……………………………….