See the Invisible

When you tell someone that you have M.E., most people tell you that they knew someone who had it, who had got better. Presumably most of these people are mistaken, or they all knew the same handful of people, since the rate of recovery is extremely low. Having said that, if people see you leaving the house, they presume you are better. If you fail to mention M.E. every time you see them, they presume you are better. Most people just generally assume that M.E. is a mild condition, which most people recover from with ease.

It is not. 

I've actually had people ask me why they don't see any of these really really sick people. It seems a really dumb question. It actually says quite a lot about the image M.E. has, rather than those people being particularly dumb. For example, if you assume you have flu when you actually have a cold, then you can't understand why others with the flu are throwing up, sweating hot and cold etc. You understand? It's the same with M.E.; it is NOT this mild affliction that the public have assumed it to be. The people you have known, or do know, who have M.E., particularly if you've not met them online, are most likely to be very mild cases of the syndrome.

The serious cases, those with 'moderate' or 'severe' M.E. are seldom seen. Those with extremely severe cases often can't even use a computer, so you won't even meet them online. Imagine that all you can cope with is lying in a dark room, in silence, every movement hurts. You feel constantly nauseous. Your skin burns, freezes, and itches, for no reason. You can tolerate few foods, so have either been losing or gaining weight for the duration of your illness. You practically rattle from the amount of medication you're on. Your limbs feel as if they have weights on them, and you can't tell whether you're holding something or not as your hands are not only in considerable pain, but are frequently numb too. Can you imagine how totally isolated these people feel? What are they to hope for?

A friend of mine, has been in so much pain that she has not even been able to talk. She just discovered that she can talk again, so to celebrate she made a small video. It's extremely illuminating. Please, view it. You will start to understand where the invisible sufferers are, what it is like for them:

Hello, ummm. Oh, I've made this message about three times, this video, and I have managed to cry all the way through. I am so distressed today, and I am so on fire, and I'm so shaky, and generally scared by what's happening. It's also a very very personal video, and I promised always to be very honest with you, but it's quite hard, coz the British English girl gets all sort of .. she wants to hide! Also I am fully aware of the irony of making a message like this, when I look like the wreck of the ##. But, you know, I'm sure I would scrub up all right, honestly, with .. uh ... a couple of ship loads of make up, and a hair brush would be a good start!

Anyway, the thing that I wanted to say, was that, I'm very afraid of dying. I think about it all the time. Ummm, the pain is so unendurable, and so constant, that in some ways there isn't any reason to be afraid of dying, because it would be an ending to something that is, on a daily basis, unendurable. And everyone who has M.E., is enduring the unendurable all the time. And we find things to laugh about, and we have each others, and we have our families and things like that, but it doesn't take away that the pain is constant and unrelenting and bit of a spiteful bully really.

And, and, I think about dying, and it it it terrifies me because I feel like I'm unfinished. I feel like there is so much of my life that I haven't lived yet. I got ill at 12, and was housebound by 15. I'd like to go to university. I'd like to travel, and I'd like to kiss boys(!), and I'd like to hug my friends, and to learn to fly a plane, and go up in a hot air balloon. I'd like to ride horses, I'd like to write books, I'm mean there's just so much I want to do. And life is so beautiful. The idea of not getting to actually live it is quite heartbreaking. But, when it's really really bad, I think .. well I do believe in heaven. I would probably do all of those things in heaven, except for kissing boys. And, I can't tell you what a heartache it is to think that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous *laugh*. Well, perhaps I shouldn't say that in case they watch this! But, it was not a fairy tale.

And, I've never danced close to someone who really matters, and no one's ever fallen in love with me, or been tender with me, or made love to me, or any of those things. And it feels like such a heartbreak to me, that I may never get those things. And, when I'm in my bed, and the fire is everywhere, even breathing becomes a mission, that's often something I think about! I think "I can't die, I can't die without knowing what all those things feel like", and I hate the idea that, in this world, because of the way doctors are neglecting people with M.E., there are hundreds, if not thousands, of young people, dying without having such ordinary and beautiful things.

I really really don't want to be one of them. But, even if I am, there are others going through it too. I mean, none of them would want to be one of the ones who didn't get those things. And it just seems so appalling to me that so little is being done, when life is so wonderful, and we would have every opportunity to live it if we weren't ill.

*sigh*

ADULT CONTENT: About relationships and me pulling my hair out over the last couple of weeks.

So, what happens when you're in love with two people, but don't realise? One heck of a mess is what! I am still in the middle of this mess, but this is how things are at the moment.

At about this time last year I signed up to a website called Plenty Of Fish. It was shortly after Ian had decided he wanted a divorce, and I was feeling isolated, lonely, and panicked living where I do, so I was trying to find friends online. The only place I could actually find, that was not for sex hookups was that dating website, which has the option to seek friends. It's a horrible site. Despite spelling out in extreme detail that you only wish to find friends, you get a lot of guys coming on to you, or having a go at you for being on a dating website when you don't want to date, and I even had people have a go at me for being ill!!!!

Anyway, I made three friends on the site. T, C, and K. K is innocent in all of this, so we'll ignore him. I hated the site with a vengeance. C was the only person I was still talking to after a month or so, so when his profile vanished, I deleted my account. I was hurt. I thought we'd been getting on well and he'd just vanished without saying goodbye or anything. A couple of months down the line I had a message from him on a forum I belong to. I was shocked, delighted and confused all at the same time. He had my website, but he hadn't wanted to phone me to contact me, so using my website he'd found another way to contact me. So, we resumed a friendship on MSN.

Meanwhile, T and I became very good friends. We've talked pretty much every day for the last year. He's helped me with various things, including moving house. And I hope I've helped him with stuff too. He's been going through a nasty divorce, which has made me want to wrap him in cotton wool for months.

When G and I split up, my relationship with C became that of what people refer to as 'friends with benefits'. I don't like the term, and we didn't refer to it thus between ourselves. I was confused as to what he wanted, until he said to me that he didn't want a relationship. Having said that however, we then had an even more confusing conversation about babies. I didn't understand whether the entire conversation was a joke to him, or whether there was an element of seriousness to it. Various things he said and did thereafter lead me to believe that he most certainly was not interested in me in any kind of romantic way, so I retreated a little feeling hurt and rejected.

Meanwhile T and I were seeing more of each other. It was coincidence really. A lot of things happened in sequence that we had just happened to have planned to do together. We realised that we were enjoying each others company a huge amount. Things we'd have normally hated doing we were enjoying together. So, taking my heart in my hands I told him that I liked him a lot more than just friends. He reciprocated. There followed one of the most enjoyable weeks I can remember.

I thought it would be the adult and proper thing to do, to tell C that I was now with someone. In my mind I figured he'd be fine about it since he was not interested in a relationship with me. I was a little anxious however. So, since I have no internet access at home, I was sat at T's on my laptop, when I told C that I was seeing someone. And from that moment on, all hell broke loose.

From C's perspective: he had been giving me space. He wanted me to move in to my new place, see that I was capable of standing on my own two feet, and gain some confidence. He didn't know there was anyone else on the horizon, so didn't think he needed to rush any relationship. Meanwhile he was aware that I may well be pregnant with his sprog. So, when I told him that I was seeing someone he was shocked. His initial reaction was actually to say to me that if I tested positive to being pregnant, to please not go through with it (with a sad faced emoticon). Then he said that it'd be the end of our friendship. He said that my being with someone else would eliminate a huge dynamic of our friendship. He was referring to the flirty conversations and sex I presume.

T's reaction to C declaring his feelings was to say that if being with him was the wrong thing for me then he'd back away. I wanted to be with him though. C's reaction had completely taken me aback, so I was still in the comfort zone with T, but at the same time extremely shocked. I didn't know what to do. I wanted someone to come and sort out the horrible mess for me. I did not sleep at all Sunday night. 

I actually do not remember Monday, but know I did not sleep that night either. Tuesday was C's birthday. He'd wanted to take me out for dinner. T made the point that if I went out for dinner with C that I'd have a lovely wonderful evening with him, enjoying his company in a relaxed yummy environment, that would make my decision for me. C actually agrees with him. This kind of suggests to me that they both think I'm rather shallow. It also indicates how fast they were expecting me to make this decision. At that point I had no intention of making the decision within a short time frame. T and I had plans to visit a friend of mine at the weekend. I had been presuming that that would still happen, and would help me in my decision making process. 

As it happened I could not have gone anywhere with C on his birthday anyway. The stress from the two of them caused me a migraine, FM pain throughout my entire body, and I had the worst period pain I've had since I miscarried a few years ago. I was in so much pain that moving my fingers to text was agony, let alone the brightness of my phones screen ... yet there was no way I could not reply to them, as doing so would cause even further problems.

Wednesday morning T texted me asking if I would like him to take the afternoon off work. I had an appointment with my osteopath. Because I was in so much FM pain I was planning to ask him to give me acupuncture, which I then expected to leave me in a lot more pain before making all the pain miraculously vanish. I had explained this to C, as he'd asked me the day before, if I may go out that evening with him instead. So I explained it to T also. He said he wanted to be there for me in the good times and the bad times.

I was actually not in pain after the acupuncture, so I suggested to T that we go for a late lunch. And then I dragged him to Pets At Home because I considered it important to cuddle animals.

My new place is really weird. It has a hot air heating system. I have been sat for a month in my living room freezing my butt off whilst this thing expensively blows luke warm air at me. A little over a week ago I suddenly realised that for some reason all the warmth is being shot out of it backwards into my bedroom. So I started doing everything in there instead of the living room. So, when C or T came over, we would sit in my bedroom. This perhaps was not so wise in retrospect.

T and I were sat on my bed with the cat. I was stroking the cat affectionately, and said to T "I love my cat, can I keep her?". I then burst out crying. T of course was completely befuzzled by this. So I had to then start explaining that C had said to me the previous evening "Can I keep you?", and that saying such to the cat reminded me of C when I was not expecting it, catching me off guard, and thus causing a tear explosion.

As I was explaining this to T, a text arrived. T said it might be C. I said I knew it was and didn't need to check. Something I've not explained previously in my blog, because it has not previously been relevant, is that I am empathic. C also is empathic. Empathy generally means that you can understand what someone else is feeling. Being empathic means you can actually pick up on someone else's feelings in a kind of psychic manner. It causes me big problems to be honest. So, I didn't check the text because I knew it was from C without having to do so.

T became upset at this. He knew I was empathic, but he had not actually seen it like this. He was upset that C and I have such a link, that C could pick up on the fact I was crying and text me, and that I knew it was him without checking. He spiralled in distress telling me that I should be with C, as he and I would never have that kind of a connection. "It's C, Olana, it's always been C. It's so obvious that it's C!" They are quite possibly some of the most gut wrenching words I'll ever hear. 

For someone you love and care for to be in such distress in front of you, saying words that are very obviously pushing you in the direction of someone else whom you also love and care for ... . I cannot express the anguish inside of me. I have never ever been in the position where no matter what I do I will hurt someone, and there is absolutely nothing I can do to prevent it.

As far as my memory serves T then turned to me and said "I'm hot. Take my trousers off!". I'm still rather confused over this. I didn't know how to take it, or what to feel, etc, so I did take them off. I then had a panic attack at him, throughout which I really can't remember much at all. As I was regaining awareness my phone rang. It was C. I was relieved when I saw his name on my screen, but he was phoning to tell me that my behaviour had been utterly despicable that day, so he was making my decision for me, removing himself from the equation, leaving me with T.

I broke down again, sobbing on my bed. T told me to call C back and ask him to come back to the house. He had heard a car roar away outside. I didn't want to call him back. As far as I am concerned people do not say things that they do not mean; he told me he was gone, I assumed he was gone and that a call from me would either be ignored or greeted with abuse. A few minutes later however, C phoned me back himself. I can't remember what he actually said, but I asked him to come back to the house. I told T to get dressed and basically pushed him out of the frontdoor while I sought my own clothes out.

C phoned a few minutes later asking if T had gone. I said he had. He told me that T was sat in his car at the end of my road. He had driven past T rather than turn down my road as he did not want T to know who he was. I started walking up the road to see whether it was T sat at the end of my road. As I did so I saw his car drive over the bridge and across the top of the road. I sat on a bollard at the end of the road and waited. He came back up the road again, turned into a side road, sat and stared at me. I waved. He roared his engine and drove away.

I found it alarming, as did C. I could not fathom why T was sat on my road after he had gone. I figured it was because he wanted to see who C was. He has subsequently told me that he wanted to make sure C actually got there, because I had been in such a state when he left. I believe him. C, however does not.

The result of all this rather teenager-esque activity is that I now have a boyfriend in C, and have had to ask T for space. I need to distance myself from him so that I can stop having such extreme feelings towards him. It is absolutely heart breaking to have to force myself to eliminate someone I love from my life, even if only for a short period of time. C doesn't trust him at all, and is hoping he will disappear forever. This is not my hope. I am hoping we can rebuild the friendship. I have a rather long journey of building trust with both of them again ahead of me.

G moved house

I knew before I met G that he was looking to move house. In fact, we had a conversation, which in retrospect, is quite funny, a few days before we actually met for the first time. We were discussing rental properties. He was looking to move soon, and I was thinking about what will happen when this house sells. One of the properties he was looking at said 'no pets'. I said I would not even consider a house that said no pets. He responded that he wasn't inviting me to live with him. It flustered me at the time, but given that he has now invited me to live with him, I am tickled. I don't think he remembers the conversation though.

Well, a couple of months ago, he viewed a house that he fell in love with. It's a little white cottage, part of a small terrace, set back from the road. It faces fields, and is in a beautiful little village. The kind of village that aims to win 'best kept village' and has an alarming number of WI meetings. He was already invited to join the fox hunt meetings.

He took a week off from when he moved house, and invited me to spend the week with him. The intention was to help him set up the house, unpack etc. I was very nervous. At most we'd only spent about 36 hours together; spending nine days together was daunting.

I can't really remember the beginning of the week. To get to his house it's literally turn out of my village, follow the same road for an hour, and turn into his road. Fantastic. Don't even need SatNav. I think I was having a good day, coz I enjoyed driving there.

My first proper memory is the Monday. It was the only day G actually had to work that week. When he'd moved in he'd sort of just dumped the furniture, boxes, and bags everywhere. He'd shuffled the furniture around a few times over the weekend, but was undecided on what he wanted to do. We discussed on the Sunday evening a final decision regarding furniture. So come Monday, while he was at work, I set about sorting the bags and boxes into the relevant rooms, and then sorting out the living room furniture. I am absolutely gobsmacked in retrospect, at how much I did, especially given how bar I'm feeling today. I expected to crash badly the next day, but I didn't. We managed to do bits of shopping in the week, and play board games, and watch DVDs. It was only as it got towards the end of the week that I started to come down somewhat. I spent all day Saturday in bed, and wasn't exactly very well on Sunday, but managed to drive myself home. As soon as I walked back into this house I just crashed completely.

I have to say, we really didn't get much done. Apart from what I did on the Monday, I don't think we actually did anything practical in the house. I have been back again the weekend just gone, and made him a list of tasks to do this week, so we at least have progress.

I don't really understand what is happening to me. When I'm with G I feel a lot better. I hope I'm not being an energy vampire; I keep asking him if I'm tiring him out, but he says not. His new house feels so full of light, and is almost energizing. Here, I feel ... ill, sick, weak, tired, and depressed. I loved being with him last week. Oh yes ... we finally admitted to being in love.