Hippy 1st Birthday

It was the first birthday of my right hip yesterday – 48 and a bit years behind the rest of me. The celebrations started with 60 lengths of the swimming pool followed by dragging my hoola hoop, not used for some time, out of the garage and into the sunny garden where I at first tentatively tried it out to see if I could still do it. 100 rotations both clockwise and anti clockwise later I reckon those hips are up to it again! After supper there was an extra walk around the football field, mapped by map my walk – although unfortunately by this time I was already very tired and it was a rather painful walk back, a sleepless night and a very stiff me who got up this morning.

I had thought we might go out last night to celebrate. I suggested to my husband the night before that we might go out and reminded him that it was my hip’s first birthday. I guess either he didn’t take me or the life changing thing for me that is my hip replacements and arthritis seriously because he conveniently forgot. I was a bit – ok a lot – upset at this, but I was certainly not going to remind him again if he couldn’t be bothered to hear me the first time. This happens a lot. Work seems to take priority and while it pays the bills and I contribute very little, it does appear to be on his mind considerably more than we are.

The thing is I don’t really know how to explain to him, or anyone else, what this is like. As I’ve said before, my mother has just decided I’m like her and she just had to put up with it so so do I, so she rarely asks about me and if she does mention it she tells me what I am like and doesn’t stop to listen to me. I accept I may shut people out and so they don’t ask me, but to tell them how I feel makes me vulnerable, and if I’m vulnerable then I’m hurt when they don’t hear me, and so rather than risk that I hide when what I would really like is someone, my husband for example, to say – yes I know this is hard, let’s do this or that to help you.

Cooking for example in the evenings. It hurts to stand for long, so usually I prepare a meal throughout the day just to finish later. I work from home and rarely go out anywhere. He goes out to work and will also have nights out with work occasionally, so to go out for me is a huge treat, but not for him. So a night where I have thought we might go out and then don’t not only is disappointing in him forgetting or not wanting to go, but I then have to prepare a meal and clear up all in one go and am in pain.

I never really understood previously that I was in pain. It is a strange thing. I read about others talking about agony, but it’s not like that for me. In some ways it is more insidious. I wondered for years if I had chronic fatigue or a constant flu, because that is what it is like. The ache in my bones is just like a really bad dose of flu. The fatigue that comes with it makes it difficult to concentrate and is trying to my patience. My husband would ask why I was huffing and complaining and I would say something hurt and he didn’t understand. I didn’t really understand myself – I was just exhausted. The diagnoses I have had have been a revaluation in understanding what is wrong – that there is something wrong in fact – and for my husband to realise that there may be a reason for my not wanting to or being able to do all the things I used to other than me just being unsociable or difficult. Now a bit less is expected of me. Less of a label and more of a signpost.

This has made my husband sound awful, and that’s not true, but he puts a lot of pressure on himself over work and money and rather takes me for granted because I’m always here. The pressure on him and my inability to look forward any more and see a way of seriously contributing makes me feel guilty. He also has a knack of talking now about not being able to do things anymore as though somehow with my diagnoses my life is over instead of just coming up with different things and ways around it. But that’s another story – even though this is the one that kept me awake all night. 

So I would have liked to celebrate a bit more than I did. For me having my joints replaced and having a chronic pain condition that is getting worse is a huge thing. But I guess that’s just me! 

Arthur the Elephant

I have an elephant in the room. Well I have a couple actually, and I don’t usually disclose either at work, because they don’t affect my work usually. But it’s been difference and diversity discussion time both on the course I teach and the course I’m taking. 

One of my elephants is called Arthur. (Arthur Ritus – get it?!) 

 

 

 

 

This is a story about a cow. It could be an elephant just as well – but this time it’s a cow. It was shared by a friend of mine in a teaching session about chronic illness, and it is just so apt I want to share it here too. It’s part of a story I haven’t read but I’ve put the reference at the end. 

“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.”
Alison Lurie – ‘The Last Resort’.

It’s the last line especially that always gets me – they pretend the cow (or the elephant!) isn’t there and they prefer it if we go along with the pretence. I wonder how many of us that applies to?! It’s easier on everyone to ignore the elephant, even to push past it, than to acknowledge it and accept it – and especially to have to feel it is imposed on someone else.

Doing the best I can.

I read a blog today by a lady called Toni Bernhard. I’m not intending to copy as we all have our own stories, but her headings made such a lot of sense – and so I hope she  won’t mind if I use them. Chronic pain, chronic illness – there are hundreds and hundreds – and many more people who suffer day and year in and out. Mine is specifically arthritis – and a severe and chronic mobility and pain issue that seems to have crept up on me so fast I still can’t quite believe it.

We mostly all have people who do a lot for us – my amazing people are my husband and my son, and also people I have met through forums or friends on Facebook, who know what is happening and always comment positively to lift my spirits, and to those people I am endlessly grateful.

However, Toni is right – there are things you really wish you could say, but don’t.

1. The grief I feel over the life I’ve lost.

It is one of those major life stressors, like death, loss, separation, moving away – endings of  all kinds.

There is a lot to grieve over, yet I didn’t really know that until now. My parents had many chronic health issues between them. I thought I’d avoided them all. And I certainly never considered grief. Surely getting to retire early is a bonus!

Now I know that there is a lot to grieve over — I’m pleased I trained to work online, because if I’d still been a teacher, for example, I would have had to leave work altogether. There is the loss of income, not being able to go out alone, the loss of independence, saying goodbye to any real activity – I’ll probably never get back up a mountain, manage the boat, join in runs or hikes or activities that others write or speak about and take for granted, and it’s lonely. My life is changed forever. There is a big dark hole where ‘I’ used to be.

Mostly I’m fine. It’s not like losing a partner or a child to death. At least I have a life and I intend to make the best I can of it. Most days are good and I can laugh and joke and be upbeat about this. If someone asks how I am of course “I’m fine” – the most widely told lie. But sometimes it just comes out of the blue. Something is said, or read, or seen, or thought and suddenly there are tears – where did they come from?! And it can be terribly intense.

It’s the whole process – and we’ll go with the Kubler-Ross 5-stage model here.

Denial – this isn’t happening to me. It’s a mistake. The scans are wrong. It’s not as bad for me as for others. Anything to shut out the magnitude of what has just been dropped on us.

Anger – “why me?”, “This just isn’t fair!”. Why not? It has to be someone – ok that doesn’t help, but that’s what I’ve been telling myself. I don’t know who I’m angry with. Actually there’s only me – there isn’t anyone else I can be angry with.

Bargaining – anything to extend things. Having replacements can fall into this category – I have new hips and am about to have a new knee – but whenever I have something replaced something else seems to be wrong.

Depression – “What’s the point?” I can’t do things, why bother trying? This is when I start to avoid people and things.

Acceptance – looking forward to this one!

And there is always someone worse of isn’t there? Well of course there is – but it really doesn’t make you feel any better. 

2. I feel as if I’m letting you down.

My husband is great. However, I do wonder why he would want to be with me – especially now. I’m more trouble than I’m worth like this. My son – I try to do what I can with him but I feel guilty when he needs attention, wants to go out and do things – it’s so rare! – that I feel terrible if I just can’t do the things I used to not so very long ago.

I feel I need to apologise for not being able to join in, for being in pain, for being too tired (and arthritis and pain make you unbelievably tired!) 

I feel as though my pain and limited mobility, and that it is getting worse, has ended their lives too. I was there for them, and now the tables have turned.

I can no longer even pretend my prospects for contributing to the household income are going to get any better. Sometimes it feels as though hope has gone too.

As my mum says, well you just have to get on with it don’t you – you have no choice – everyone else needs looking after – I had to do it – I can do anything I put my mind to …. yes – that’s guaranteed to make me feel worse. Especially as she never asks how I am (because I’m just like her apparently so should just accept it as she does!), but will ask about my family (great 🙂 ) or tell me about my brothers whose lives are falling apart as a result of their own behaviour and attitudes (not so great 😦 )

3. A chronic condition can be embarrassing.

I  always set unrealistically high expectations for myself and then judge myself negatively when I can’t meet those standards. I’m a perfectionist. But I’m trying to get better 🙂 

We live in a culture that repeatedly tells us we need not be sick or in pain. Also, we have this British stiff upper lip – we pull ourselves up and just get on with things and don’t complain. 

Guilt creeps in too – as though I did this to myself and it’s my fault I can no longer be the person others expect me to be. Do they expect it? – or is that another unrealistic expectation of my own?

When I am asked to do something I have to now think about whether I can. I have always wanted to go to Italy, among other places. I’ve never been abroad beyond 4 days in Paris where i was pregnant and ill, and 4 days in Disneyland Paris where my son was ill. The opportunity was finally raised and I’m having to say no. There are all sorts of places I would like to go and see, but I can’t walk there or around them. To do it my husband would have to take me in a wheelchair – not fair on him. We’d be in the way of others – not fair on them. I’d slow everyone down.

And in a future where we try to keep our private lives private, I’d have to declare to the world my most inner secrets of my health – that I am in pain, I am stiff and sore and can’t move or stand or walk. It’s like saying I’m old, fat, unhealthy – but it’s my own fault – I should be young, slim, fit and up for anything.

Now I feel guilty because I have someone else to clean my house, touching my things, being in my space – because I can’t do it myself, but in telling others I feel it makes me sound snobby – as though cleaning my own house is beneath me. I can’t go out to work any more. Online work is limited and I will never earn a great deal of money. The pressure is on my husband to work, look after us, look after me! – and also earn enough somehow to get us a home of our own and keep the household going. I feel helpless in the pressure he has on him because of me. However, if I had a choice, I would certainly be independent. Being dependent is not something I would wish on anyone – that feeling of not being entitled and having to ask for things when you don’t earn or have the ability to do it for yourself.

So to my husband and son – I love you – I don’t want to be like this and I am grateful for all you do for me. But it sad, and embarrassing and lonely here. I feel I should be better for you – and I’m doing the best I can.

 

Letting the light in.

Forget your perfect offering

There is a crack in everything

That’s how the light gets in.

Leonard Cohen

This quote was at the end of an email I received today and it just fits so nicely with so many things in my life just now.

One thing is a course I’m doing in supervision. I know I can do it, but I’m struggling regardless. Unless everything is perfect and I’m meeting every learning objective I’m finding it impossible to write at all, and so prevaricating. I may be doing a bit of that with these blog posts too. Unless everything is perfect I’m just now doing it – and of course things are not perfect. One of the things I have been doing to counteract this perfectionist streak in myself is to work through Overcoming Perfectionism by Sarah Egan and Roz Shafran. Of course by reading the book I’m also avoiding doing the things I have to do, but just starting it and getting an idea of why I am like this is a help.

Then I came across this quote by Leonard Cohen this morning and thought it was about time that I did something, and if it’s not writing an essay and a case study then it should at least be catching up on some e mails and writing up this blog!

I go quiet when things are not right. When it sounds as though I am whinging and complaining, because this does not make me the nice, calm and easy going person I want to be. When I am admitting to problems because then I am not perfect – I am vulnerable and people can see my cracks.

Since getting the diagnosis on my spine from the MRI I have been to the GP and am being referred to a spinal specialist. It seems thought that there is a very long waiting list as the usual person for referral is in Birmingham but just comes down here to do some work, where there is no specialist at all. What I have received is an appointment for ICAT. I have absolutely no idea what that means. I also found when I received the letter I couldn’t get through to change the appointment – it was set at precisely the time I will be in theatre having my knee replaced. That’s going to make it rather tricky to get there! I did get through this morning though, and a rather pleasant young man explained that it is something between physio and specialist. They do examinations and exercises (that’s going to be interesting 1 week after a knee replacement), x rays and MRIs if necessary. he seemed a bit surprised that his had happened already, so I get the impression that this is an appointment to prioritise people and get the actual list for the specialist down.

My left knee replacement is 3 weeks today. My knee was damaged in 1983, so I suppose it has been a long time coming. I remember having back ache from quite some time ago, although yoga always helped, and later when I had a bit more money, massage. However, it does feel as though, even when it clearly has been on the downward slope for a very long time, that the deterioration of my joints has speeded up considerably. I wonder if it is so quick sometimes, or whether it is because I am now aware that I notice other things. The pain in my neck to left shoulder I saw physio for a couple of years back and still comes and goes – is this actually linked to spinal problems? If so, is there also a problem further up my spine or is it down to the canal stenosis? Would my back hurt so much if I didn’t know there was something wrong with it? r would it hurt but I would still be blaming my hip surgery? Am I noticing the pain in my right knee now because I low that my left needs to be replaced? Is it going to be worse when I no longer have the ever present pain in my left knee?

And pain anyway. My neighbour broke her leg recently and had to have it pinned. She has been non weight bearing for weeks and is in pain. She is managing on paracetamol though. Is she in so much pain because it is sudden and recent? Is it worse than mine? Or am I just used to my pain because it has gradually got worse over a number of years? My mum has a morphine patch. She says she has no pain now, only stiffness. Am I just in pain because I know something is wrong? Would I disregard it if I didn’t have diagnoses or if I had been told there was nothing wrong with me? Of course – then I guess I wouldn’t have pain! Sometimes I think it isn’t too bad. Btu when the GP told me that the government were going to make Tramadol a controlled drug, she would not be able to give me so much and could I manage on paracetamol I burst into tears. I always thought I had a high pain threshold. I had my son with only gas and air and deep breathing. Is my pain as bad as others? Or should I be managing better than this? So many questions!

I have had some days over the past few weeks that have been tearful ‘why me?’ days. It does seem unfair that all these things should be so bad at my age. I am worried and afraid about the future – especially as I am my son’s carer and now my husband is probably always going to be the only ‘breadwinner’. I feel I can no longer look forward to holidays abroad, climbing mountains, walking – all things I wanted to or enjoyed doing. Perhaps if my replacements had gone well then I would be looking up and not seeing the next thing to have to deal with but the light at the end of the tunnel.

Which was why I latched onto that quote this morning. Maybe I don’t have t wait until the end of the tunnel for the light at all. I’m not perfect unfortunately. I seem to have ever more cracks. But then, if that is the way the light will get in quicker, then perhaps that’s not so bad.