February | 2016 | the myasthenia kid

Last month I celebrated or not my 9 year anniversary of being sick. You’d think with this much time passing and me not getting any better I wouldn’t feel like I still have to constantly explain what is wrong with me those that know me. I do try to cut them some slack, obviously there is a lot wrong and even I struggle to remember every single condition. However it does become really grating when yet again someone asks a stupid question or suggests a cure or tells me they “feel” the same way I do.

I will apologise in advance because this is probably going to turn into a slightly ranty post. I do feel that it is warranted due to the sheer lack of understanding that is displayed towards me. So just to clear things up I will break it down for those of you struggling to understand.

1.Tired
When I say I am tired, I am tired. Not tired as in I have been to the gym, had a haircut and wandered around the shops for a few hours tired. It is not the kind of tired where you’ve worked an 8 -10 hour day. I am the kind of tired where I haven’t slept more than 4 hours a night for a few days or I have had excessive amounts of pain to deal with or I am fighting an infection which is causing my PoTs to go crazy or I am dealing with all of those things. I am the kind of tired where stringing more than a few words together is difficult, I am so tired that I could fall asleep standing up (if I could stand for longer than a few minutes without feeling faint or fainting). I feel so tired that it’s actually getting difficult to walk because I am struggling to lift my legs up.

This is where I cut people a little slack because I am tired pretty much all of the time. After a few hours of being out of bed I would quite happily go back there for the rest of the day but I can’t because my back would cause me all sorts of problems. I guess the issue is language due to there being a limited amount of words to describe what I am feeling. Exhausted seems a little melodramatic for my liking, using it every day would diminish its effect. Fatigue is another word I have an issue with again because it just doesn’t sound quite expressive enough. Saying or texting the sentence “I am fatigued” just seems a bit wishy-washy. I’m shattered equally doesn’t really cover it. It’s the kind of word you use after a 5 day week and partying all weekend, it is a throw away term.

The problem is so many people in society complain of tiredness due to the stress and pace of their lives, it is an overused word which has lost its impact. It is partly my fault because when I say I am tired you can only compare it to your own level of tiredness. When you are chronically sick fatigue / exhaustion / tiredness take you to a whole new level one you never knew even existed. Sometimes even I am shocked that my body is still able to function when I am suffering from this level of fatigue.

2. Pain
Now let me be crystal clear I am not diminishing anyone else’s pain nor claiming I am the only person in the world that suffers with it but it is slightly irritating when someone claims to be in agony yet they are a) still working full-time b) going out socially or c) telling everyone about it on social media. Everyone has different pain threshold my definition of agony will be different to others because we all perceive pain differently. However I think many of you will agree with this

I also have on a number of occasions had this look on my face when someone has told me that they are in agony. When I am in agony my phone is the last thing I am looking at. I am usually counting down the minutes until I know my pain medication is in my system.

Pain is subjective, what I class as a 10/10 on the pain scale others may class as a 5. In my daily life I have pain, every single day. It is at a level where sometimes it is background noise and other days like today despite being almost maxed out on pain medication it is wanting to make itself heard. A 10 out of 10 pain for me is usually caused by bowel adhesions, the pain from these will cause me to black out. I use this as my 10 as I don’t have labour to compare it with. When you are female childbirth is always used as an example of a 10 out of 10 pain. Heaven knows what they tell men, I never get the male example given to me they are usually completely stumped when I utter the words “I don’t have kids”. Today clearly my pain is not at a 10 out of 10 level because I am typing my blog however to be able to do this my neck is in a soft collar (because since Saturday my upper back has been going in and out of spasm and the pain is originating from my neck. Possibly having my hair cut today was not a great idea.) and I have four hot water bottles placed on various parts of my body. I would rate my pain today a 6/10 it’s noticeable but not completely incapacitating. To someone who wasn’t used to this level of pain or who had a different pain threshold it could be their 10 or their 1.

The word agony is thrown around quite easily, I think most of us would agree when you stub your toe it is sheer agony for a few minutes. It can in those few minutes be incapacitating but after a while the pain subsides. It may throb for the rest of the day but you can carry on your planned activities. Agony is not being able to go to work or walk around the shops or carry on with your planned activities. Agony to me is not being able to get out of bed despite taking enough morphine to sedate a bull elephant. Maybe I just see things through Chronic pain / illness tinted glasses but the word agony is being distorted through overuse. You can tell a doctor that you are in agony but get zero response, firstly because they can’t feel your pain and secondly you are probably the 10th person that day to tell them that.

Agony is a lonely place to be because others don’t understand it and can not feel it. You can’t share it, you can only carry that burden alone and wait patiently for the meds to kick in. I find pain that creeps above a 7 on my personal pain scale starts to alter my mood. I become very angry, snapping at everyone and finding everything annoying. Pain at that level will move me towards “I’m not doing people today” because the pain is interfering with my brain so much I can barely function. So I get frustrated when people use the term at the drop of a hat. There are other words to use to describe pain discomfort (that would describe my current level of pain perfectly), sore, aching, throbbing and one of my favourite “twinge”. I have twinges in my back quite a bit. I don’t know if it is because we are becoming lazy with language or more and more people are discovering a flair for the dramatic but it is a pet hate of mine when others use the word agony when they clearly aren’t in agony.

Unfortunately I use the word tired and the phrase “in pain” quite a bit. I imagine that also causes people to not hear what I am saying because they hear it so often. I need you to hear me, I don’t mention my pain until it’s hit a level that I can’t ignore, the same goes with tiredness. I am sorry if you don’t understand that however the problem is yours not mine. If you ask me how I am and I actually tell you the truth, you are amongst the privileged few. If I acknowledge pain in front of you, it has reached a level where my energy is being drained away and it is interfering with my cognitive function. I don’t tend to announce it as I don’t want to put a downer on the proceedings. If it’s mentioned I can’t physically or emotionally hide it anymore.

I don’t want bucket loads of sympathy, I just want to be heard and acknowledged like everyone else on the planet. So understand me when I say I am tired or my back is hurting I don’t expect you to fix it but I also don’t want you to ignore it. I want you to respect that at this point in time I will not be the life and soul of the party, I will not be jumping to attention if you ring or text me. A little understanding goes a long way.

I in turn will not diminish your pain or your level of tiredness after a long day at work because 9 years ago I was you.

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!