Where has the week gone?

I am having one of those weeks where all the days seem to have merged into one. I can’t believe its going to be Friday tomorrow. Its seems like since last Thursday all I have done is sleep and stay in bed. I am walking around with my eyes closed as the house is crying out to be cleaned and the washing bucket is limping downstairs on its own accord! Well it will have to wait as I’m really not up to playing the good wife at the moment. Thankfully Hubs couldn’t care less, he’s given the place a quick sweep around a couple of times this week, but as he says as long as you are OK the rest of it can go to hell in a hand basket!

Tuesday this week was very scary. As you may have read in the comments I gave up and took Tramadol. I didn’t know that this can affect the neuro muscular junction (like MG), after I had taken it I kept feeling really short of breath but I kept ignoring it as I was so tired and it wasn’t enough to really frighten me. By 12pm Tuesday I was really gasping for breath like a goldfish that had been removed from its bowl. I had to use my oxygen concentrator and take Mestinon within the hour I was feeling good. My eyes opened up properly, since taking the steroids my bilateral ptosis had been bad, so I was walking around looking like I was half asleep. Hubs couldn’t believe the difference he said my yes hadn’t been that wide open for ages.

My response was very typical of someone who has MG to deteriorate when initially starting steroids. That’s why most MG patients are hospitalised before and whilst starting steroid treatment. I have been extremely tired and weak since starting the florinef. I have been in agony with my neck as the muscles have been so weak. Monday night was so bad I ordered myself a neck brace which has come today. My neck feels great in the brace, my spine doesn’t feel so compressed. My shoulders don’t know what to do with themselves as they have got so used to being permanently hunched up to try and give my neck and head some support! So I hope that I will soon start to pick up and get out of this exhaustion rut.

Whats odd is apparently I don’t have MG so there is no medical reason for my body to have reacted in this way to taking the steroids. Very Bizarre unless in fact I do have MG…………..?

I am currently managing about two hours out of bed at a time at the moment. Even when I am out of bed I am having to lie on the sofa. I like to change surfaces so that my body doesn’t develop pressure sores. That would be a nightmare on top of everything else!

I don’t really know what happened to Wednesday it seems I slept through a lot of it. Thursday (today) is feeling like it might go along a similar vein. I am sleeping OK at night (ignoring Monday into Tuesday) I have no viral illness or any reason why my body has decided to just shut down and sleep. Its all very weird. However if my body is saying sleep it must have its own plan and I shall just listen rather than trying to fight it

Thanks for reading xx

Pain again and other things……

I am in so much pain today it feels like I have been trampled by a horse! I can honestly say excluding my toes every joint in my body hurts today. From the base of my skull downwards it hurts, it hurts to move it hurts not to move. I am exhausted with the pain I am in. I slept really well 9 hours but it was interrupted due to really bad night sweats. I was awoken by my pelvis and lower back screaming at me. When the pain is like this I actually feel 3 inches shorter than my 5ft 9in! I feel like my spine is being compressed.

I am holding off the painkillers at the moment as I know tramadol stops me sleeping but at this rate I am going to have to give up and risk not sleeping tonight. I haven’t even bothered with paracetamol as it will do absolutely nothing to my pain levels. Its on days like this I wish I could take something to knock myself out so I could sleep through the worst of it.

My plan of action at the moment is to try and distract myself from the pain by catching up on emails, blogs and the like, But even that is becoming difficult.

The good news is Dr J my new GP is ringing this morning so I can update him on how Thursdays appointment went and see if he has any ideas regarding pain relief and the like. Hopefully I will be able to update you with some good news.

The weather continues to be glorious and very warm for this time of year. I managed to sit outside for an hour or so yesterday. A blackbird has decided to make my neighbours house his song post and its lovely. Every morning I get to hear his full repertoire! Next door have blue tits nesting in their bird box so they keep having a little look into our garden. They have a go at some quite wonderful acrobatics on my washing line. I am now thinking about getting a bird feeder put up. It needs to be in a safe place though a} so the dogs don’t eat its contents – its happened before and b} somewhere the cats cant terrorise them.

I love this time of year when its starts to get warmer and brighter it really lifts my spirits. I am just waiting for the house martins to come back. They come back in a big group and spent several days flying over the housing estate doing a roll call checking everyone has arrived back safely! The saddest part of the year is when they all come back to the housing estate for a couple of days before they venture off again. I know then that the winter is coming and the long nights and cold days will soon be back. We also seem to be in the flight path for Canada Geese, and my my they are noisy when they fly over twice a year!

I just need to kick hubs into action and get some plants for my decking. We lost a lot of our patio plants this winter due to the snow. So my decking is full of  empty plant pots! The strange thing is my strawberries have gone mental sending lots of shoots off everywhere. Where I can I have tried to get them into pots with some success. It would be nice to have a crop of strawberries this year that we could actually eat – Mollie our eldest dog swiped all the strawberries last year. The weird thing is she waited for them to ripen before eating them!

Yesterdays ramblings….

I just cringed looking at yesterdays post – grammatical errors and the like! It seemed to make so much sense to me yesterday when I wrote it. But really I was space cadet number one! Today my head is clearer but I feel lousy. I am completely and utterly exhausted after yesterday.

Some people may think I am a complete fruitcake for saying that I can’t sit upright as it makes me ill, so I thought I would take the time to explain. I can sit upright, but I can’t sit with my feet below my waist – like normal people sit! I have to sit with my legs up out in front of me, so on a recliner or perched on the coffee table or if I can get my dogs to move, on the sofa. Due to my autonomic issues and the probable ehler danlos syndrome if I sit with my legs below my waist my blood pools in my legs, causing my heart stress as it tries to pump the pooling blood back up to the heart and onto my brain. On a bad day the effect of sitting like this can be felt in a few minutes on a good day maybe 5 minutes.

So sitting in a wheel chair for 3-4 hours causes me untold problems. It literally wipes me out for days whilst my body tries to recover from the stress placed on it. I read some where that a person with POTS uses 5 times more energy on standing than a normal healthy person, that our quality of life can be similar to some one suffering from heart failure or COPD.

 Today I have spent the day in bed recovering. My blood pressure has been 80/40 with a pulse of 100 most of the day, vision grey, voice slurred. Yes sitting up does this much damage to me. On a bad day mum can hear it in my voice, she will know before even I do that a particular day will be  a struggle.

Its very difficult to get people to understand what it feels like for me to sit normally, but I will try – I agree it sounds totally wacky and to be honest I would never have believed that sitting down or standing could make you so ill before it happened to me. I would have scoffed at the notion, so I understand the disbelief I face, but believe me it doesn’t take away the frustration.

Not being able to sit or stand has massive ramifications on normal everyday life. It means travelling anywhere in a car causes me to be ill. It means going out for a meal with friends is impossible, family gatherings a no no. Taking a shower a massive adventure will I or wont I faint? Working a nigh on a impossibility – who works – other than the oldest trade in the history of the world – on their back?

So this is what happens – Initially I feel fine, then I start to breathe more heavily as there is less oxygenated blood in my system (its sitting in my legs) my body tries hard to compensate by increasing my breathing. I start to feel unwell – this is really hard to describe, its not unwell like I have a sniffle on the way but an unwell as in my body is trying to tell me something is seriously wrong I have an overwhelming urge to lie down. In a wheel chair this is incredibly difficult I can’t get up and lie down I would be locked up! So I rest my chest on my legs trying to shorten the distance between heart/ brain and feet. It doesn’t always work and you feel quite ridiculous!

 If I can’t put my chest on my legs or lie down I start to see stars (bright flashing lights) in my peripheral vision. My vision will go blurry and start to grey out so that I can see only a tunnel. I then start getting confused as I can not maintain my attention on even a basic conversation. At this point my body is screaming lie down, lie down! My head starts to thump as my brain is no longer receiving enough blood and the oxygen that blood carries. Eventually I become less and less with it. Like yesterday I maybe able to hold off the passing out stage for a while and just feel incredibly disorientated. I hate feeling like that as I feel vulnerable and scared.

The worst thing is that you can be feeling like this and some dear old soul will come up and say “my your looking well….” I will be quite honest there has been may a time I have wanted to beat the crap out of the person that has said this to me. Because the old me never looked like this, compared to how I used to look, I do look ill. Its just over the last few years people have got used to me looking like this.

It isn’t just strangers that will say this to me, but friends who I have known for years. I call them friends but I don’t know if that’s really true. I know that they are sick and tired of me being ill and never getting better that they get fed up with the fact that we never go out anymore. That if they see me it has to be at my house so that I don’t have to travel and know I can sit with my feet up.

 I told one “friend” that I was now on steroid treatment, they seemed to believe that it was a cure and that today I would be better. They were bitterly disappointed when I told them there is no cure at present, just treatments to try and improve my quality of life. They just can’t get their head around it. Whilst their life whizzes off into the future I am here taking baby steps. I don’t begrudge the way their life has turned out, but a little compassion or even to attempt to understand what I go through day by day, hour by hour, minute by minute. Instead of making me feel guilty because I can’t do what we used to, would be nice.

I have tried to explain to them on numerous occasions why I feel so ill and what is going on with my body but I am made to feel like I am making it up. Surely its impossible for someone to feel so ill and there not to be a cure? 

So now I try really hard not to discuss my illness with them, they don’t understand and I don’t need the feigned sympathy which rapidly disappears before they continue to tell me how wonderful they are. This sounds very bitter but go onto any forum where people suffer from chronic debilitating illness and behind closed doors you will see hundreds of posts from people stating the exact same thing.
 I am lucky I have the support of my husband and family and some dear friends. But there are people out there whose families dont even believe they are sick.

These days chronic illness is seen by the media and people that don’t have it as something to be borne with a sunny disposition and positive thinking. Its made people who suffer with chronic illness feel like they can’t say “you know what I feel like a complete pile of shit today” because people don’t want to hear it. You are made to feel guilty if you voice the fact you don’t feel great to the healthy world and made to feel that some how its your fault. Well it isn’t my fault and lets see how you would get on with life the way I live it?

OK so I may sound bitter I am not. I just wanted to express what its like to live in the world with an invisible disability and to make you think just because a person doesn’t look sick, doesn’t mean they aren’t sick.

Back to myself!

After feeling so isolated Monday and not wanting to do anything my mood has completely changed. After whining on my blog I made myself do a few basic housework things and sat and watched a programme I had taped. Monday seemed to stretch for an eternity, I just wanted Hubs to come home. As soon as he did after 6pm everything felt better.

Mentally I am feeling good , although I am nervous as I have a hospital appointment tomorrow. Too many times I have been given a diagnosis at one appointment to have it taken away at the next and end up with nothing. Other than being told that my illness is all in my head. I can no longer trust the majority of the medical profession and that’s a sad thing to say when they are the people I need to get help from.

I have been sleeping better and have had no bouts of insomnia since I think it was Thursday last week when I went around the clock. I have been sleeping for around 9-13 hours a night and its been good deep sleep. I worked out that if I took Tramadol at all in the day, it stopped me sleeping at night. So I have stopped taking the tramadol and I am trying other meds to stop my pain, plus using heat pads when I can. However if the pain gets so bad that I need to take it then I will.

It sort of lends to the theory that there is something neurological going on as people with neurological illnesses process opiates in a different way to “normal” controls. Which is why when I am an in patient in hospital they are always really careful when they give me medication like morphine or tramadol. Even though my notes state that 2 neurologists think there is nothing wrong with me. Its a bit strange that the staff in other parts of the hospital beg to differ.

My main problem at the moment is staying warm – even though the weather has been really mild and people are not wearing coats my hands are permanently blue! I am wearing thermal vests, t-shirts and sweatshirts to keep warm. Not to mention my trusty knee length socks! My feet still feel like blocks of ice!

I am going through a bit of a rough patch, my blood pressure keeps dropping and tilting my head forward or bending forward is a complete no no! Its making my head swim and making me feel like I will pass out. I am also having problems with standing or walking around. I am OK for about 3-4 mins and then I am feeling light headed and my brain says ” no you need to sit down NOW!” if I am lucky I will make it to some where decent to sit if not I just have to drop to the floor. Its a strange feeling, your here but not here and even talking is extremely difficult and you can’t follow the conversation. So the last few days have been spent either horizontal or sitting with my feet up in a recliner.

So yes the mood is better but the body is lagging behind!

Motivating ones self

I am so bored today! I don’t know what to do with myself. I can’t be bothered to watch TV, read or do any writing I am sick of my own company. I think this is a payback for a busy weekend and seeing my parents etc. I always have this come down the first day I am alone.

Normally I cope with my solitude pretty well finding things to do to entertain myself. Today I just can’t be arsed. It was even touch and go whether I could be bothered to post on my blog but I have forced myself to come here and write. It didn’t matter what it was about as long as I posted.

Entertaining yourself constantly when you are housebound the majority of the time can be a chore. Normally I manage to plan things that I would like to do that week. This week I have stuff to do I just don’t have any motivation to do them. They aren’t burning issues or anything I can get passionate about.

I’m not depressed, tearful, I don’t feel particularly unwell I know I have felt worse. I did try this morning to do some physical stuff but my heart rate went off the scale and left me feeling weird. That’s now passed. So what to do?

I find this mood strikes me when I have been active socially. I enjoy the company of others but normally I do enjoy my own company. Today I can’t stand my own company!!! I had two lovely visits from my parents over the weekend and one of my husbands friends came up for a visit as well. Hubs and I did a few jobs around the house together for me it was a busy weekend. I really enjoyed myself but now I am left with this empty feeling. Is this how every day of the rest of my life is going to be?

I know in reality obviously it isn’t, today I feel glum because I had such a good weekend. Tomorrow will be different and I will get on an even keel again.

Thank god I have my blog in which I can moan and whine to so that I don’t chew the ears off the people who are close to me.

I do have some good news I am tolerating the antibiotics and they are making a difference. They are making me very sensitive to sunlight but that’s a price I am willing to pay. So its not all bad!

I have to find some good in today!

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……………………………….

Constant state of panic part two

Well my friends on the forum have come up trumps again. I am not going nuts nor am I suffering with some sort of anxiety disorder. Apparently this is normal potsy stuff.

They believe (and as they actually live with this condition and my flare up coincides with hubs accident) that the accident has triggered my stress hormones that we potsy people don’t respond normally too. The hormones are the fight or flight ones and it seems I may have got myself into a vicious cycle, my body is refusing me to allow me to calm down by continually bathing my system in stress hormone.

Potsy people or people with autonomic nervous system dysfunction can produce too much of the hormone or none at all. They can also release the hormone at odd times or when the body no longer needs it as the threat has passed. Noradrenaline and adrenaline are the stress hormones I am talking about. Pots has a lot to do with the bodies responses to Noradrenaline. (the fight or flight response)

Its actually made me feel calmer knowing that I am not alone in this and I have the people on the forum I can go to if I need help. I didn’t think it was just anxiety as there is nothing that I can say yes that’s a trigger. Its very bizarre.

I can tackle this in two ways either chemically or try and resolve it naturally. I would like to not go down the medication route if possible and try and resolve it naturally. The best cure is for me to try and get as much sleep as possible and to try and do some meditation or yoga to send the calm down vibes to my brain.

Medication would involve a beta blocker which could leave me feeling worse as it could lower my already low blood pressure leaving me open to fainting spells.

So for now as I have been sleeping most of the day due to the sheer exhaustion of being on edge! I am choosing the sleep option! I have some meditation CD’S and I will make time to play these everyday to try and get on top of this.

Thanks for listening.