Thursday 22 March 2012

That thing that makes it hard to stand up ...

Orthostatic Intolerance
Orthostatic Hypotension
Postural Hypotension
Whatever you want to call it, it isn't fun, it hurts, it's annoying, it is in fact the definition of why I am classified disabled.

Last week I went to the hospital for an appointment with an endocrinologist. The hospital system is such that everyone has to queue up to register when they arrive. It is a long queue. I got a pain in my head, and started to see black spots in front of my eyes. A few days previously I'd had a similar problem whilst queuing for a carvery (yum); that time I kept crouching down in the queue as I simply could not stand up. I felt the same in the hospital queue, but when I crouched down to alleviate the pressure, people started to walk around me in the queue. So I stood. The nurse behind the desk saw me start to go, and came around the desk just as I hit the floor. I've been saying I passed out, but I did not actually lose consciousness. I just went splat; my entire vision had gone, completely blacked over, my head was hurting really badly, and my legs went from under me. She sat me down, registered my appointment, and hurried me through the system. 

I was told told to put my head between my legs. I had my blood pressure taken. I kept saying to them it was Orthostatic Intolerance so my blood pressure would be back to normal after they sat me down, but they ignored me, took my blood pressure and said "Well it wasn't your blood pressure that caused it!". I was wheeled in to my endocrinologist ahead of everyone else, where he asked me about endocrinology type things, and about the passing out. He too had never heard of Orthostatic Intolerance, even when I explained it to him. He didn't know what I meant when I said that I was seeing black blobs either. I had thought black blobs was a fairly normal way to pass out, since I've experienced it for years. I always thought that was what 'blacking out' was.

So, my description of Orthostatic Intolerance is thus: 
Standing up is uncomfortable, particularly standing up in a stationary position. The longer one has to remain in that position, the more uncomfortable it becomes. The discomfort is hard to explain. Sometimes it manifests with an intense pain in the lower legs, yet sometimes it is an intense pain at the front of the head, behind the eyes. It always manifests as an odd discomfort in ones posture. You simply cannot feel comfortable. At it's worse it also applys to seated positions; if one has to sit upright, with one's legs in the normal position whereby they reach the floor from the seat, it too can be uncomfortable. I always either sit crossed legs with my legs underneath me, or out in front of me on a bed or settee. As I understand it, what happens is that in M.E. patients, the blood doesn't pump itself around the body quite so effectively. In a healthy person, when they stand up, the blood pressure in the legs changes, in order to pump harder against the increase of gravity it has to fight. In someone with M.E., this change is delayed, so the blood starts to pool lower down in the legs (hence the leg pain). Sometimes it takes a few minutes to catch up, othertimes it can take longer. 

You will find that if you click the title of this blog post it takes you to an article about Postural Hypotension on the Action for M.E. website. This article described this uncomfortable sensation in a more professional manner than myself.

"Faintness which is worse soon after standing up, especially in the morning, is indeed due to a transient fall in blood pressure. It’s not about having low blood pressure as such, but about a failure to maintain normal blood pressure on standing. Two main factors seem to play a part in this. One is that the reflexes that normally maintain blood pressure when we stand up are a bit sluggish to respond. This can be due to the effect of the illness on the autonomic (inner) nervous system or the effect of ‘cardiovascular deconditioning’ – in other words, the reflexes getting out of practice, (for instance as a result of a long period spent in bed)."

And apparently, I should be able to help myself out of this painful pit. Though, I have to say that the reason I spend so much time in vertical positions is actually because of this symptom, so I'm not convinced it causes it.

"The problems can be reduced by getting up slowly and in stages, and generally ensuring that one spends a little time upright each day, even when severely disabled. [...] The other factor is that people with CFS/M.E. may be chronically a little short of salt, whether through dietary changes or other secondary effects of illness, so a little extra dietary salt may help; the kidneys will get rid of any you don’t need."

 My aim now, is to make my doctors aware of it. The article is very useful, and has brought to my attention that doctors may know it by different names. I am sure there will be other articles if I seek them under these names. The CFS specialist I saw a few weeks ago certainly had not heard of Orthostatic Intolerance, so perhaps if I print this and a few other materials for her, it will help, and then hopefully she can help me.

Tuesday 20 March 2012

With great sadness ...

ADULT CONTENT: Well, sort of .. not really ... but if you don't like any hint at sex and relationships, you'd probably better not read this post.

I've not posted for a while. There is a good reason for this. This was supposed to be a happy post announcing that I am pregnant, and discussing the possible implications of being pregnant with M.E.. So yeah .. I'm pregnant! I think I am about 15 weeks now, but I keep getting confused; the due date is supposedly September 10th, so perhaps someone can work it out from that!?!

However, I have also found myself single, and homeless. So, I am absolutely terrified. I will post about what happened with my flat another time; I need to wait for that to go through court before I can actually say anything publicly anyway. As such, this post is more about what has happened than about my baby, or being pregnant, or M.E., or letting agents who take the Michael. This post is about what to not put up with in relationships.

I am aware that I have painted a fairly rosie picture of C. And everything I have previously said, still stands. He was caring for me, he fed me, watered me, took me out in the wheelchair. He was pretty good at that part. However, there are a few other sides to him which I have not written about, mostly because:
a) he reads my blog and 
b) he blows everything out of proportions.

I am exhausted, so I am cheating with this post. I am writing it in bits, hoping that piecing it together will make sense. So, first of all, let me describe the house to you:
It's a timber framed dorma bungalow; that means it was a bungalow that with a converted roof space, and is made from wood. It looks small from the outside, but it is actually an eleven roomed house, having at least five bedrooms. However, anyone walking past it would think it was derelict. The windows at the front are broken, duct taped together, and the drive has three dead cars parked on it, a mattress by the front door, and the garden hasn't been tended to for years. The hallway is quite grand, and he had painted it; though he had painted one side one colour, and the other another colour, which gave a very unbalanced feeling.
The only other room I saw the first few months I was with him was the extremely large living room. He kept telling me he knew it needed decorating. We started doing so in December, before I had a really bad M.E. relapse. It has only just been finished now.
When I started staying there, we slept in one of the downstairs bedrooms, which he also told me he knew needed decorating, and it really really did. My naive assumption was that the reason he was saying this about these two rooms, was because he had sorted out the other rooms already. As I got to know the house it became apparent that this wasn't the case, he had actually done very little.
I was warned about going in some of the rooms 'because they were a mess'. The back bedroom had been 'the rabbit room'; the room in which he had been breeding rabbits. When I looked I found that the room still had wooden pens in it, and smelt of earth, and faeces. The living room, which I was used to, smelt of cat urine (he used to have eight un-house-trained cats). A few weeks ago I had to go in to the middle downstairs bedroom seeking something of mine he had apparently placed in there by mistake. I couldn't get the door open. I've never seen anything like it.
The bedroom that we were using had the wallpaper coming away from the walls. I was a bit worried that it may have mould in there, especially since I was coughing more and more the longer I stayed there. Then he did something in the living room which resulted in him releasing mould spores throughout the entire ground floor. This meant I was only able to stay in the upstairs rooms. Upstairs was only half renovated, with bits of walls missing and doors not attached properly, and two of the rooms were full of junk too.

The house, for me, apart from the fact that I was reacting badly to the mould, was not really the problem. Unfortunately, I believe that C currently thinks the house is the problem, but I'll get back to that later. The problem for me was his obsessive, paranoid, aggressive behaviour. For most of the duration of my relationship with C I believed this stemmed from what happened at the beginning of December. (You can read this post here). However, as time progressed, as I thought over how things were before December, and as I pieced together things since leaving, I realised that these are his core behaviour features. I did not cause them, they were already there:

He started off by stalking T online. He found his Twitter, watched his Facebook, found his blog, followed him on various forums, coming home every day telling me new things he'd found out about T, and making them sound as sinister as he could (he'd tried to tell me that T had cheated on me during the one week T and I were together). He kept going back over what had happened with T, bringing it up for discussion every day. He would sit on the side of the bed and let out a deep sigh; this deep sigh was always the indicator for me that a discussion about T was about to come, so I started dreading it. I asked him to stop, and he kept promising that he would, but he didn't. He actually got worse. He was stalking me; reading and re-reading my blog posts over and over. He watched every single thing I did on Facebook (probably still does) ... coming home from work to ask me why I'd said something to someone on Facebook, and telling me what I had liked etc. There is an app you can download for your phone to chat with people, "Whatsap", it shows when you were last logged in to talk to someone. He started watching it to see when I was logged on, assuming I was talking to T on it (which I was some of the time). He took my phone, went all through my texts, all through all my photos, and then had a go at me for some of the photos I'd taken with T before C and I were together. He picked up on every single thing I said, making them mean completely different things than I was saying, reading in to absolutely everything. We would have a conversation, then he would go away to do such and such a task, and come back half an hour later to 'talk to me about what I'd said'. The most innocent thing became guilty without charge.

It became apparent that he considered my week with T to be an affair. That he had decided that he (C) and I were having a relationship from the end of October onwards. He told me he didn't trust me.

He is a huge drama queen; exagerating things for the biggest affect he can, and I'm gullible, so for months I always believed the stories he told, exactly as he told them. In the last few months I have repeated things back to him that he told me long ago, and been told point blank that I am LYING and I am WRONG. He started accusing me of hiding things from him a few weeks ago; told me that I was looking for somewhere else to live. This was three days before his father was coming down to help us move all of my stuff into his house from my flat.

I have been at the end of my tether for a long time. The problem is that I felt trapped. Various friends have told me that I should get out, and the sooner the better, but I didn't know where to go, or what to do, let alone how to do it. My motto has always been to give people the benefit of the doubt. So this is what I was doing. C kept telling me that he had changed, and these things would never happen again, so I gave him the benefit of the doubt. On the occasions when I expressed my frustrations I was told that I was unreasonable for judging him. There are so many instances I could give as examples of his behaviour, but it was Saturday a week ago that was the complete last straw for me.

T took me to a hospital appointment on the Friday. C had said that he was ok with him doing so. (C had said for a while that he was completely over everything to do with T). Friday evening he picked a fight about something (I can't remember what). Later on he told me that he had arranged for his mother to come down on the Saturday, saying that if I was too tired, they would do something without me; I was under the impression that they would be going out somewhere. Saturday morning, he picked another fight with me, and as usual it turned into an argument about things that happened at the beginning of December. In the middle of the argument he screamed at me 'RIGHT, when my mother gets here, THIS STOPS'. Suddenly I realised the ulterior motive for her visit. I told him point blank there that I did not want to go through with him and his mother, what he kept putting me through every day; that if he made me sit and talk to both of them it would have consequences.

He obviously ignored this. I was exhausted because of going to hospital. The bed on which I was situated at C's is in the corner of the room. Next to it is the computer. His mother sat on the end of the bed, and C the other side of the computer. I was trapped. C went over absolutely everything, but manipulating everything he could to make himself sound like a victim. His mother, thankfully, isn't as stupid as he expects her to be; she could see that most of this is due to his behaviour, and told him a number of times that he needs to stop being an idiot. She said the same things to him that I have said frequently, but apparently when I say them I am venomous. I apologise if my view of myself is incorrect, but one thing I am fairly certain I am not, is venomous. He then tried to blackmail me in front of his mother by threatening to tell her about my 'sordid' sexual exploits with G.

His mother unfortunately came in to the house with a slightly different motive to C I believe, so things got a bit messed up. When his Dad had helped me move in to the house he had gone away horrified at the state it was in. Assumably not only because C has lived there 5 years and he could see very little improvement, but also because of the thought of a baby being brought in to it. The first thing his mother said to me when she arrived was "this house is a big white elephant!" Her motive was to encourage C to do it up to the basic minimum, and sell it. She seemed to believe that all the problems C is experiencing at the moment are due to this elephant. I disagree in a very large way. The majority of the problems come from the fact that he is a big drama queen. From what he has told me of his life before the house, this has always been the case; racing cars in the manner he did and does are indicative of this, as is the manner in which he likes to show off his musical prowess. One of the big problems for me in the relationship is that he idolised me. He placed me on a pedestal and expected me to be the princess. He told me who and what I am on various occasions, though he could not see this for himself. I do not believe that I am the first girlfriend he has done this to. I also do not believe I am the first to have run away from him because of it.

His mother also said to him numerous times that less is more. She was referring to how much he smothers me, trapping me in the house, making it impossible for me to breath or think. Unfortunately C took this to the extreme straight away. Being bed-bound, for the last few months, he has made sure I had food and water in the bedroom, so that I can at least have lunch while he's at work. I usually have two slices of toast with a tin of mackerel. On that Monday following his mothers visit, he left absolutely nothing. I was therefore not only forced to go all the way downstairs, which was exhausting, but also to enter the kitchen which reeked of dog urine and faeces. I held my breath long enough to fill up a bottle with water. There are three freezers in his house; I had no idea which one he kept the bread in, and had no spoons left to try and work it out, and I could not find the fish either. So I went hungry. Less is not more, if less means starvation. I couldn't believe how stupid he was. When he came home that evening his first comment was "I suppose I'll get it in the neck for not leaving you lunch too?", so he knew exactly what he'd done, and had done so to try and prompt a reaction from me. You would have thought that after several months he would have learnt that any attempts to prompt reactions from me are always ignored.

Before I continue, I would like to say, in reference to the discussion with his mother, that the way he tried to portray me was disgusting. He said very venomously to me, in front of his mother, "I have to go and stand in front of this man, knowing all of your sordid sexual exploits with him, and ask him for money like a pauper!" He was referring to collecting money from G for me, because G owes me a lot of money. C has always said to me that he has no problems regarding G at all, that his only problems had been with T. The first time he and I went to collect money from G I made sure that C was comfortable doing so. The sordid sexual exploits he refers to are a post I have now removed from my blog, because I knew he was re-reading it. He is fully aware that the incident he is referring to is an incident in which I felt violated, so to use it as a weapon against me is despicable. It was and is his choice to enter a website that gives an adult content warning before you can read the blog. It was and is his choice to then read a post that states clearly at the top that it contains adult content. It was and is his choice to read and re-read the same posts. And of course, it was him who came to me to ask me about the post, and extract further details. As far as I am aware that is the only 'sexual exploit' I have discussed with him regarding G, since C and I started a relationship. If he was so uncomfortable talking to G, then why, when he last went to see him, did he discuss in great detail with G the details of herpes, the location, the description, of what G had suffered? He manipulated the truth, the facts, to make himself look like a victim to his mother, and painted me as the evil girlfriend. The thing that is particularly disturbing about all of this, is that after the six hours of discussion were over he turned to his mother and said he was going to marry me. If he really finds me so distasteful, why would he aspire to such a delusion?

And so, I left last Tuesday. I grabbed a few things that I considered to be important, though I could not find in that mess of a house most of what I had wanted to take, got in my car and left. I didn't know where I was going, or what I was doing. I just knew that I needed to get out of there. That evening, unsurprisingly, C texted me a number of times. He also got his Dad to text me. He messaged one of my close friends a number of times asking her where I was and what to do. When he told her his Dad had texted me she was livid, telling him he should not give out my number. He lied to her saying that I'd given his Dad my number. I did not, but as it happens, it is useful to now have it. She told him to stop messaging me. He obviously translated this to mean 'do not send her text messages', and so the following day I checked Facebook to find an essay from him:

Dear Olana,

I just want to say sorry.

The way I have behaved has been terrible. I can't believe how I have been to you.

Since Saturday, I've been living each day one at a time. I viewed each day you stayed here as a positive. All I could do was to try my best to give you space and not crowd you, respect you, listen to you and try to get on top of the jobs around the house, one at a time, so as to support you. The front room came first - my attempt to give you somewhere more homely to go and spend time. The landing banisters were coming second - my attempt to make you feel much safer up there and to try and make the place feel, again, that bit more homely. I also put your clothes in your wardrobe in the hope that, again, it made you feel a bit happier that things were around you, not in bags down stairs. Small steps I know but I hoped they were steps in the right direction. I was doing what I could, since Saturday, to try and at least make things more comfortable for you. You did see me getting jobs done to try and help you feel happier in the house - I know this place is so depressing. I am hoping dad and I next week can get quite a few jobs done which should help brighten things up here a lot more, which hopefully will make the place feel much less depressing and more warm and homely.

Unfortunately, my chances had, very understandably, run out. I only had those two days, Sunday and Monday, for you to see the change in me and I wasn't around for much of either of those days what with the going out on Sunday and work - I really had snapped out of it though, literally. Suddenly I could feel again, I could see and feel how much you were hurting and all of what I had done. I felt dispicable, I knew it was all my fault. I really have "seen the light" here and I realise what I've done. It took a huge kicking from both you and my mum for me to see it, which again is something I am so sorry for. I'm sorry I didn't tell you this in person, which I feel I should have. I wasn't sure how to without it stressing you out... and a passing "sorry" was never going to convey just how much I have realised and how much I am sorry for.

Having snapped out of that horrible place I fell into since December. I really have woken up here. So many times you tried to tell me I was stressed / stressing, you tried to tell me so many things - I am so sorry I didn't listen to you. I needed a serious kick but I just wish it hadn't taken that kicking on Saturday to make me see everything and realise. I can't believe what an inconsiderate selfish idiot I was for so long.

I know I've hurt and broken you and that your note reads very much as a "final" but there's one thing more I wanted to write to you.

To come home and find you not here last night... I was devastated. I understand why you had to and I feel absolutely terrible for having driven you away. I am so, so sorry.

You not being here is so upsetting. I miss you so much. I kept hearing the pets playing last night and it sounds very much like when you are typing on your keyboard... which had me bursting into tears, wishing you were here. Coming home tonight I was dreading - walking into a house that feels so empty without you here, knowing all I've done. I miss you so much :(

I love you Olana, with all my heart. You are the only lady I've ever wanted to have a child with and it's happening - that is something I am ever so happy about. You are the most fantastic lady I have ever met. I'm so ashamed of how I've behaved. I can't say sorry enough for all I've put you through.

With all my love,

From your, very sorry, C.
The message in itself sums up the problems. It's as if he thinks I'm a doll, and building the dolls house around me will solve things; unfortunately the conversation with his mother a few days previously compounded this view. Despite what he says, I did not see him getting jobs done. I was confined to bed, upstairs, so of course, could not see what he was doing downstairs. It is of little significance really, but the clothes he put in the wardrobe were not my usual clothes. I didn't recognise some of them, and when I came to try and find clothes on the day I left I couldn't find my usual clothes anywhere.

I actually do not think the house is depressing. I think it is either a renovation project or needs demolition. I believe that if it was in the US it would have been condemned years ago. They are more used to timber framed houses though. I was excited about the prospect of building something out of that tomb, until it made me ill, anyway. It is simply because his mother does not like the house that he has assumed I do not.

He says he had 'snapped out of it'. He 'really had'! The problem is that I have heard that so many times. Of course, by saying now that I have heard it before, I am judging him. A no win situation.

The hardest bit for me to swallow from his message though, is that he considers the discussion with his mother to have been him getting a kicking. He set it up! He knew how tired I would be, and yet he trapped me in to that situation. He was throwing accusations at me for six hours! He was manipulating facts and events to make me look like a very unpleasant person. He took an event he knew was traumatic to me and used it to sully my character. And he attacked the core of who and what I am. For him to not see any of that, and to think that the situation he engineered to have a go at me, was actually bad for him when his mother did nothing but show him love, I believe he is delusional.

His mother asked me several times during the six hour discussion whether I thought I was an angel, that I thought I was blameless. My answer, very honestly, was "no". As most people who know me are aware, I tend to blame myself for everything. If I was not blaming myself for how things were, there is no chance I would have been there. In retrospect now though I am looking at the last few months and asking myself exactly how the blame lay on me. I admit, I am ill, frequently bed-bound, which makes it very difficult to have a normal relationship, going out and enjoying life, with me. I cannot say that I did not snap at C at times. The only thing I believe I am completely guilty of is not being a mind reader; not knowing that C wanted a relationship months before he actually admitted to it, and therefore falling in love with someone else. If indeed, he did. Everything I've been accused of is due to his lack of communication prior to December, or simply not true. Perhaps, months down the line I will look back again, and see where I was actually at fault.

I am not going to pretend that this is an unbiased account. Obviously, it is my account of what has happened to me, and as such virtually impossible for me to be impartial. I am currently very angry towards C, and unlikely to be able to see the wood for the trees for a long time.

So, in conclusion, at the moment I find myself homeless, and pregnant. At a time in my life when I should be celebrating what will be happening in September, learning about babies and how to care for them, I am actually terrified for my future. I don't know if I'll be able to support myself, let alone a child. I don't know where I'll live, or who with. I don't know whether Social Services will even let me keep the child with my health the way it is.

Please be happy for my baby that  it will be entering the world. It needs some people to be happy for it.