Holiday Post

Mr Myasthenia Kid has been on holiday over the last week and for the rest of this week. Due to this I woke up today Wednesday 26th June and realised I hadn't written this weeks blog post and I was completely clueless as to what to write. So I am going to be really lazy and just spam you with some photo's of Dembe who has totally stolen my heart!

This was his first meal back on January 11th 2019. We laughed so hard with him climbing inside the bowl. He was so dinky I was permanently terrified that I would stand on him or fall over him.

This was taken when he was 9 weeks old. It seems ages ago that he was this tiny, it's crazy to think it was this year.

 When he first came home he was obsessed with anything that smelt of his daddy and still is. His latest trick is to raid Jay's dirty laundry basket and steal pants out of it. If there are no pants anything will do as I found out this morning as he brought a T-shirt into my bedroom.

We bought him a cute little toy box which we thought would last him a very long time. His favourite thing to do was chuck all the toys out and climb inside. When he first came home he couldn't even get in the toy box and we would have to get his toys for him.

In this photo he is 19 weeks old and it marks 11 weeks that we have had him home. It is really crazy how much he has grown in just 11 weeks. At this point he could get on and off the bed by himself, climb the stairs up and down, jump on and off the sofa. All stuff he was way too tiny to do when he first came home with us.

A month on and he has grown again! No longer looking like a baby but like a small grown up doggy.

This along with his first go in a paddling pool is my all time favourite video of him. He had been confined to a small patio for around 6 weeks whilst the garden was revamped. This was on the first day that he got to explore the whole garden. He went crazy! Just adorable.

His first go in a paddling pool back in May. He loves his paddling pool.

He has got so big he can now jump on the bench, the last thing he has been able to master.

This was yesterday at the garden centre as part of our homework from his obedience training classes. We are taking him out to lots of places so he gets used to being in different situations as he is being trained to be my assistance dog.

Last month I taught him how to take my socks off. He loves doing this.

It took him minutes to master. I am still so proud of him.

He is now 7 months old, todays achievement was that he cocked his leg for the first time on a walk. Jay was so proud of him. I missed it as I am unable to accompany them on the walk due to the distance and terrain.

He has given us such joy in an awful time. I really wouldn't be without him.

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.

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.

A hard week health-wise

The last week has been really hard health wise. I haven't been the sickest I have ever been but I have certainly been sicker than I have for a while. There is no "reason" that I can identify for this other than perhaps the decline in my health that I have been waiting for since we lost Mollie and Frankie. Stress, emotional upset and change can all upset my chronic health conditions and it seems everything wanted to bubble to the surface last week. I did just power on through which now I am wondering if that was the right thing because I am having more and more MG like symptoms this week - shortness of breath, limb weakness etc sorry I should have said my idiopathic hemifacial spasm the latest bullshit diagnosis for my Ptosis, totally ignoring all the other issues.

If I am honest there is only one symptom that has me terrified and that is when I will suddenly and for no reason lose the ability to take a deep breath. No matter how hard I try to suck the air in my chest fails to move. I end up taking a series of short breaths to minimise the panic that rises in me. I have an elephant sat on my chest who is refusing to budge and I know that if I went to hospital my breathing would be ignored and I would be labelled with a mental health condition rather than the fact that there is something going on at the neuromuscular junction which has been proved time and time again with the ice-pack test. Apparently for the latest neurologist I have seen for these symptoms back in 2017 I believe, it is just a placebo effect. Words fail me.

Sunday freaked me out a bit as well. I wasn't feeling great when I got up and knew there were a couple of jobs that I had to do, then I could sit around and rest for the remainder of the day. Once those jobs were completed I noticed my legs had become exceptionally heavy, like there were lead weights attached. I could walk but it was very slow and shuffling because lifting my feet was taking a supreme effort. I attempted to climb the stairs but that was impossible. I may as well have been sat at base camp for Mount Everest without oxygen, as those stairs were impossible. After attempting three I came back down on my bum and then wondered how the hell I was going to stand up again. Thank god for Mr Myasthenia Kid being home and with it happening on a Sunday. He could help me to my feet and get me to the sofa, plus organise my medication. 

You see I get to take Mestinon / Pyridostigmine Bromide for my PoTs symptoms. I usually dose as follows 7am 60mg, 11am 30mg, 3pm 30mg or 60mg depending on how I am feeling and then 30mg at 7pm. I have to be careful with Mestinon by body is extremely sensitive to it. Too much and I can be twitching all over but mainly my face and it can trigger terrible stomach cramps. It takes a lot for me to take another 60mg during the day but at both 11am and 3pm I ended up taking the full dose because without it my legs wouldn't work. My legs not working is not a PoTs symptom, it isn't an EDS symptom either. There is no medical explanation for this symptom, other than the fact the medical profession believe its all in my head. Which is why when my breathing gets difficult I panic. This medical condition that appears so much like MG / Neuromuscular junction disease will be ignored and it could end up killing me. I am lucky, my symptoms are mild but I have bouts like this especially when the weather gets warmer where my body fails to cope. I worry one day I will be so ill that the doctors refusal to think outside the box will mean that I will be killed by medical negligence and that is a fucking scary thought.

I mean if there is nothing wrong with my breathing......why have I had home oxygen since 2009? In the current economic climate of ongoing austerity since 2010 why if I don't need support for breathing on occasion why has this precious money wasting resource not been taken from me? Home Oxygen can't be cheap,  I have an oxygen concentrator a machine that pulls oxygen from the air and then feeds it down a nasal cannula at a purer form. In case of power cuts I also have to have a huge oxygen canister in the house, I have to notify the local fire-brigade and I am classed as a vulnerable service user by the people who maintain the power grid. The canister also impacts my home insurance cost. If I didn't need it I would get rid of it, not only are the canister and oxygen concentrator ugly they are taking up valuable space in my small home. So in an age of cuts to all services who is covering their arse by allowing me to keep my home oxygen? 

Home Oxygen won't save me if I end up in a full blown Myasthenic crisis. This is where the muscles around the lungs and the diaphragm become paralysed and can't move so you can't get the air in as when you attempt to breath nothing happens. In this situation you need to be in hospital on C-pap or Bi-pap or in the worst case scenario put into an induced coma whilst they ventilate you - sticking a tube down your throat and breathing for you ( intubation ).  Today as I am writing this the elephant has returned, breathing is hard. I took my mestinon at 7.30am already my right eye is starting to droop, its seems I may have to take my next dose earlier.

The Myasthenic like symptoms are the worst thing I currently deal with and I am lucky they are mild the rest of the time. Last week was like a smorgasbord of every medical condition I have. My PoTs symptoms were crazy - heat induced despite me upping the salt tablets ( to 8 a day ) there  were multiple episodes of pre sycope ( near fainting). I had vertigo luckily I caught that attack very early so I only had to endure the room spinning for an hour but it leaves me tired and feeling out of sorts. I had a migraine on Friday one of the worst I have had in months. It was actually the first migraine I have had since January 14th ( my last one was the Monday after Dembe came home with us). My Tinnitus has been so loud it has been difficult to hear the TV and radio. I have felt constantly exhausted .

Then there was the joint pain and my right shoulder continually fighting to escape it's socket. To be honest I have only scratched the surface of what I have dealt with over the last 7 days. I really don't like to say much most of the time because I don't want to be accused of moaning but if I stay silent about it people think that you aren't as sick as you claim you are. You just can't win, you're an attention seeker if you say something and a liar when you don't. It drives me nuts. I stay silent because to be honest it is easier that way. I don't want Jay aka Mr Myasthenia Kid worrying about me when he is at work, I don't want lots of platitudes on social media. It isn't because I think they are false it makes me feel like I am drawing attention to myself and trying to play the sympathy card and that's just not me. 

It's been really hard this week being a puppy mum, I love Dembe dearly, I wouldn't be without him but it is hard work trying to keep him occupied whilst using as little energy as possible. On the whole he is brilliantly behaved but like it is with kids there are days when he can be a little bugger and whilst amusing, it can be frustrating, especially when you aren't feeling well. He is just a puppy though at a little over 6 months old and over time he will calm down. I guess I was so used to Mollie, Frankie and Willow being older and more sedate this has come as a real shock. Jay does loads, he gets up and does his breakfast, he does all the walking and he comes home everyday for lunch to give me a little break and check I am ok. I take my hat off to those of you who are chronically sick and have children, I don't know how you do it.

It has been a hard week health-wise, I just hope things start to settled down very soon.