Thursday, 20 June 2019

Brave

I don't class myself as brave although I have had plenty of people in the past tell me I am. Most of the time I am a quivering wreck, my anxiety has been awful of late, if there is nothing to worry about my brain will find something and keep me awake at night about it. Dealing with people, crowds, noise or even just being in the outside world alone fills me with terror. Yes on many occasions I force myself out of the house and attend appointments alone, dropped off outside but once out of the safety net of the car I am on my own. After over ten years of being pushed everywhere in a wheelchair ( I don't have the strength or the capacity in my joints to move under my own steam without dislocations and severe pain, oh and the risk of fainting) today I took a brave step into the outside world alone and went to my hospital appointment by myself. I have never done this. I have never seen a hospital consultant alone in the whole history of me being sick. This is huge.

Now a few people have got hung up on the fact that I didn't travel the hours journey to the hospital by myself. Having pointed out the fact I don't do crowds, loud noise, bright lights or social situations alone, what the hell do you want from me people? Public transport is shit, I just couldn't have done the journey on my mobility scooter from my town to the city. Taking the bus or train would have meant multiple changes in places I don't know. I'd have had a fucking heart attack, there isn't enough valium in the world to get me through that. 

This is the person who freaks out about calling for a taxi let alone getting in one. One small step at a time folks you don't run a marathon the first time you decide to have a jog, so why the judgement about the fact I didn't travel alone? It was still fucking huge for me to navigate the hospital alone - one of the biggest in the area, to a clinic I have been possibly twice before ( as it location changed within the hospital).

I also need to point out any medical appointments set off my anxiety and can lead to me not sleeping properly for several weeks before I go. Due to the horrendous treatment I have suffered at the hands of the medical profession in the past. So I may go to doctor's appointments at the gp surgery by myself and the same for dental appointments but it doesn't mean I am happy or confident doing it. I hate it. It has got to the point where I just don't like, feel / safe or comfortable if I have to leave the house by myself. My home is my safety zone where I control the light, noise, amount of people etc

So for clarity I travelled in our car for an hour with my husband Mr Myasthenia Kid and our trusty sidekick Dembe, who is in training to become my assistance dog and a bit of an emotional crutch as well to be honest. We tried to get parked up but there were no spaces, so hubby had to drop me off in front of the hospital, he set up my mobility scooter, helped me get on and left. Yes folks he left, I had the appointment letter in my hand and off I went on my adventure on a mobility scooter I have also never used by myself before - someone has always been with me. So many hours were spent last night panicking about it breaking down, knocking stuff over and getting lost. This hospital is not very user friendly and it is very easy to miss a turn and get lost.

This hospital is one of the largest in this part of the country ( South West of England) . Its main entrance goes on forever shops, coffee shops, stands for charities etc and hundreds of bloody people. Who's walking speed resembles an extra on the walking dead ( For the uninitiated a Zombie). I am not massively confident on my mobility scooter owing to the fact on a couple of occasions I have only just managed to avoid being headline news in the locality.....once I nearly went over the sea wall because I was chatting and not looking where I was steering and on another occasion I moved the control in the wrong direction shot off the pavement into the path of an oncoming car. Despite the look of abject horror on my face I got a mouthful of abuse from the driver ( and I can't blame them for that). So my nerves were a little frayed already and I had been having nightmares about old people going down like ten pins in my wake.

It actually went a lot smoother than I had imagined it would. That wouldn't have been hard though as at 2am this morning, I was going over every possible scenario in my head. Members of staff asked me if I needed help ( that was probably the look of sheer panic on my face) asked if I needed doors held open, lifts held. In fact being alone on a mobility scooter I got more help than when I was with Mr Myasthenia Kid in a wheelchair. Which strikes me as a bit bizarre as even with him we still needed assistance with doors etc.

I checked myself in at the clinic and tried to find a place where my scooter and I wouldn't be in anyone's way. One of my major gripes with hospitals is that despite it being quite obvious that people with disabilities will use them, they do not provide waiting rooms with a space where you can park up a wheelchair or mobility scooter where you are out of the way. It seems a bit fucking ridiculous if you ask me that hospitals seem to not think about accessibility when it comes to their outpatient departments. They ram the waiting room spaces with chairs but when you bring your own it's a bit of a bloody nightmare to find somewhere to park up and not cause a major obstruction for staff and patients. Anyway rant over. I found somewhere that I thought was out of the way and thankfully it was.

My appointment went well, managed to get myself back on some medication to prevent my migraines as the amitriptyline isn't doing its job, I have had two migraines in the last two weeks. Plus I really shouldn't be on amitriptyline with PoTs. 

I managed not to crash into chairs etc as I reversed out of the room and turned outside. I did however manage to get lost on my way out of the hospital. Probably because I got cocky it was easily remedied with reversing and taking the turn I missed. When I got to the foyer I was just getting ready to find a spot to stop and get my phone out so I could ring Jay and left him know I needed to be collected, when I heard him say to Dembe "There's mummy look". Dembe was so well behaved, he came over walking beautifully on his lead and then jumped up and gave me lots of kisses. I can't tell you how glad I was to see them both. I was no longer on my own and I could make my way back to the safety of the car.

It was also the first time since we had started training that he has walked with Jay and me, when I have been using the mobility scooter. He walked beautifully and I could fully concentrate on driving rather than worrying that I was going to run him over by accident.

Today's travel and navigating the hospital corridors have left me exhausted. I don't feel particularly brave but I do know this was a big deal. Maybe when I am not so exhausted I will be able to appreciate how very brave I was today.





Thursday, 13 June 2019

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.