I am a work in progress

Today has got me in a reflective mood, 10 years ago today I met the man I will spend the rest of my life with. On Sunday we will have been a couple for 24 years, in September we will have been married 21 years.

I look back now and think how young we were when we met just 23 years old and just 26 when we married. Thinking about how much we have both grown personally and as a couple, I do occasionally think that 26 was far too young to settle down. I don’t regret getting married at that age but if one of my younger friends said to me that they were going to tie the knot at that age I would be asking them if they were really sure! Despite all my reservations now, I have to admit we were engaged within a month of meeting. We both knew we had met the person we were going to marry.

Those of you who are long term readers of my blog or who know me outside the realm of cyber space will know that life has thrown its fair share of trials and tribulations at us, like it does at anyone and I am proud of the way we have pulled together. We have had people who have tried to insert themselves into our relationship, we have had people we thought were friends  attempt to split us up. 

No relationship is ever a fairy tale, there are always things that annoy you about your partner and things that annoy them about you. I do think the most important thing to remember is that you wont change your partner by being in a relationship with them. Far too many people enter into relationships and think they can mould their partner into their ideal partner. Then over time when their plan doesn’t work, the quirks they thought they were going to get rid of through marriage or just being together, start to irritate them beyond belief and it can mark the beginning of the end for that relationship.

I have always been quite pragmatic about my relationship with Jay. After a series of heartbreaks as a teenager where I worked out that some of my behaviours could be seen as obsessive, needy etc I read lots of self help books. Not about “getting a man” but ones where I would identify and work on those aspects of my character that were still quite immature. I am quite proud of the fact that at the age of 19 I realised I would never be happy if I didn’t feel more confident in myself. I’m not about the whole “if you don’t love yourself no one else will love you bullshit”. I am more about understanding why the previous relationships had failed and there was blame on both sides. I had been devastated beyond belief with two of them ending despite now looking back and realising what a lucky escape I had!

For the three years before I met Mr Myasthenia Kid I was single, not a nun I can assure you but I was single. I had learned to be secure and happy in my own company. Sure at times I was lonely, especially when I moved away from home and lived on my own in a town I didn’t know with people who were strangers to me. I know at times when I closed my front door at night, I knew I wouldn’t see another living soul until I was back at work the next day. This situation didn’t change when Jay and I started dating as he lived an hour away from me, we saw each other on Sundays and days off. It was really good for me to have this situation as it meant that my whole world didn’t revolve around him, I had to make friends and carve out a life for myself, which I did.

It was 18 months until we lived together and even then it still felt like we were in a long distance relationship as he was working twilight shifts in another town. So he would be leaving for work at 4pm and wouldn’t get home until 2.30-3am. At the time and I really don’t know how I did it, I would get up, have a cup of tea and a chat with him when he got home. Because otherwise we could go days without seeing each other properly. This period of around 3 years was really tough on our relationship, it was much harder than when we were in separate towns. Mr Myasthenia Kid was permanently knackered with working these shifts in a shitty location. He was too inexperienced to stand up for himself and as a consequence had to put up with some appalling employment conditions, with god awful managers.

In around 2001, we actually worked together in the same location ( and did until I was ill health retired in 2008 ). This was a good laugh, we still didn’t see an awful lot of each other as we worked a lot of different shifts. It also wasn’t always possible to have the same holiday as each other. The main problem I seemed to encounter was staff not understanding that we were separate employee’s and disputes with either one of us, seemed to drag the other one into it no matter how hard we fought to remain independent from each other. When working in the same store we had even less time together really as usually we only had one day a week off together. We also liked the money that working Sunday overtime gave us. Due to this we would have 2 Sundays a month together and occasionally our day off in the week would coincide. 

I know some people think I am crazy when I say that ill health retirement does have it’s bonuses. At the grand old age of 47 I have spent more time with my husband than many people get in a lifetime. I see him every morning, every evening and he pops home for lunch most days. I get every Sunday with him and every day off. Last year when he was shielding I had 7 weeks solid with him and yes we are both still alive! That was actually one of the longest periods of time we have ever spent together without one of us working. Our relationship has grown stronger and stronger since 2008. At the point when I was ill health retired in 2008, I really don’t think it would have taken much for our relationship to have broken down irretrievably. There was nothing that either of us had done wrong, it was just the fact that we were spending so little time together and we were both taking each other for granted a little.

We have been incredibly fortunate that despite the stresses and strain that Chronic illness has thrown our way that instead of drifting apart we have become closer than ever. I know ( this feels so weird saying it) a lot of our friends think we are their relationship goal. They want to be as comfortable in their own skin as Jay and I are together. We have been lucky in the fact that not only did we fall in love but we became each others best friend. We can finish each others sentences, quite often we will suddenly start singing the same song at the same time. Quite often we will bring a subject up that the other has been mulling over but hasn’t talked about with the other. At times it is incredibly spooky.

Now that all the soppy stuff is out the way, I will quite happily tell you that there are things that annoy the hell out of me about Mr Myasthenia Kid, I am sure there is stuff about me that grinds his gears. I have mentioned previously his awful habit of getting his blue hair gel in the bathroom basin, every morning and never seeing it, so I have to clear it up. Also he never puts his hair gel away once he has used it. Daily I have to put it back on his shelf in the bathroom. The fact that he is still smoking, despite telling me three years ago, when I gave up he would. I hate the smell of it. The fact I have to tell him to do stuff repeatedly and then he moans at me for nagging! Due to my misphonia, I can’t abide the sound of him eating, I know that there is nothing wrong with it. I just can’t stand the sound of anyone eating or nasal breathing sets my teeth on edge and make me really angry! So I am not a barrel of laughs to live with, coupled with my streak of perfectionism he has a lot to deal with!

But somehow we work. It feels effortless most of the time. Occasionally I have to step back and deal with things pragmatically, knowing that he was like this before I met him and if he hasn’t changed in 24 years it ain’t going to happen now. Since dealing with things realistically and sensibly instead of blowing up like I used to life is a lot less stressful. I no longer get angry at the small stuff that doesn’t matter and I don’t “punish” or “berate” him for being himself. I just decided “what’s the point in that”. I do believe with age comes wisdom, I hope I use that wisdom. I am not perfect by any means, I am a work in progress as we all are.


Flare up – Occipital Neuralgia

I had been having a good couple of weeks at the start of this year, of course I had my usual problems but there was nothing that would test me as far as pain was concerned. I had brief episodes of bowel adhesion pain, the odd migraine but nothing that laid me low for days at a time, until now. Over the last few days I have had a flare up of occipital neuralgia that has come out of nowhere and no pain relief that I take touches it.

Back in December just before Christmas I had a MRI scan done to look at my neck to see if there was anything “bony” causing my pins and needles in my arm / hand / fingers ( yes this is still an issue after the car accident in August) . They were also supposed to be looking at the occipital nerves to see if they were inflamed. I got the report back last week that said as there was nothing structurally wrong, orthopaedics would be discharging me, with an open referral back should I need it. Their advice that these things would take time to settle down due to the fact I have EDS and  we were looking at years rather than months. Which is a bit different from the private doctor I had a video call from in September that without examining me or knowing my medical history reported to my solicitor that I would be back cooking and shopping within 5 months. It is shame he made such a tit of himself seeing though I haven’t done those things since 2008! He didn’t even know that I use a mobility scooter or a wheelchair and claimed I left the car unaided at the scene of the accident. Making it up as you go along springs to mind, considering I never left the car at the accident scene and I haven’t walked unaided since 2008. I don’t know what is more shocking the fact that this guy works for my insurance company or that he could file a report with over 30 errors in and despite me telling the solicitor this, providing a correction for him, I heard nothing. But I digress.

The magical 5 months when I will return to my normal activities pain free is up on 19th February. After the last three days I really can’t see it happening. As I type my left arm is going numb. I have pins and needles in my hand. The occipital nerves on the back of my scalp feel like they have been set on fire and put out with a shovel. Yet apparently this will all miraculously disappear the stroke of midnight on 19th. Excuse my cynicism, when this crap has been spouted by a doctor that spent the sum total of less than 9 minutes on a video call with me.

When the occipital neuralgia is bad I can’t sleep because the back of my head / neck touching the pillow is agony. The other night I was so uncomfortable that I ended up sleeping without any pillows because my neck hurts so badly, even with the variety of neck pillows and normal pillows ( I have 6 pillows on my bed) at my disposal. I always know when it is going to be bad as in the evening when I am watching tv in bed, the back of my head starts to ache where it is in contact with the pillows. Sometimes I can prevent the situation getting worse by immediately lying down and going to sleep. However that only works 50% of the time and many times I am in the situation I found myself in on Monday night with ever escalating pain and nothing that I would normally do preventing it from getting any worse. 

During the day during a flare up I am left with a stiff neck, a feeling of constant pressure on the base of my skull, that travels up over the back of my head. I get zaps of electric shock type pain into the back of my ears. The pain will also travel over the top of my head, go into my eyes and forehead. When it gets this bad it will trigger a migraine. I am left wanting to repeatedly bash my head against something in the hope it will do something to stop the pain. When it gets to this stage it is exhausting because a) I am not sleeping and b) pain just wipes me out. It makes my mood very low which I hate because sitting around feeling sorry for myself is not something I do. I chose a long time ago that I wasn’t going to sit and cry every day wailing why me? Because basically why not me? Plus crying everyday would be a waste of the life I have, having lost friends along the way, I don’t want to waste time wallowing. I want to spend my life doing the things I enjoy, spending it with people who are dear to me.

Don’t get me wrong there are days when I get fed up with it all, days where I wish this wasn’t my life. I limit myself to a maximum of 24 hours like this and then I have to snap out of it. The most I ever moan about my condition is in the pages of this blog. I use this as a place to express myself, people can chose to read it or scroll on by. I sometimes equate my blog as shouting (sometimes screaming) into the void. It is somewhere I can get something off my chest and then move on. By the time people read this, I am usually in a better place and ready to face the next challenge.

A lot of the times  writing the blog post is enough to make me feel better about something. It is deeply cathartic. I have also started keeping a diary this year for the same reason. Sometimes it is nice just to feel like you have voiced your fears / concerns / hopes / dreams. You don’t necessarily need someone to listen to them to validate your feelings you just need to get them out of your head.

I am hoping that this flare up will soon subside and I can get back to “normal”.