Changes are not good for me. Changes are even worse because I hate them. I don’t know what to do with them and they scare me. After almost quite literally overnight having my life as I always knew it taken away from me, I have not adapted well. Worse – I have now had to think about starting to adapt my environment to suite me, and that is not easy. Or cheap. Ten months ago, on Halloween 2013, I began this journey of hell. Somehow, coming down with pneumonia, move house, go to work, and having to single-handedly look after our new rescue dog who had just been brutally attacked and was terrified of everything, just broke whatever that was left of my body (and it was already extremely frayed). I’m not technically disabled (and I do not like that word, anyhow) – but I have been certainly left unable to do a lot of things without help. A lot of help.
I had my longterm best friend, who I live with, home on sabbatical for months. During that time she became my accidental carer, my helper, my little guardian angel. My SBT-mix, my lovely puppy dog, Soul also became my accidental helper. As my health deteriorated, my mental health deteriorated, and the pain kept on increasing, and if it wasn’t for these two I don’t know how I would have managed to get through the last nine months since this started. However, things have changed again. My friend – who is also my companion and helper – has now had to return to work… Sabbaticals aren’t forever. On the positive side, she returned to a closer office to home so she leaves later and returns earlier than before. On the negative side, I’m left to fend for myself. And I’m rather terrified about it, and about the fact I must now do it every single day. The most basic things are exhausting and daunting. Making food is reduced to making sandwiches from pre-made sandwich fillers or things like sliced ham. Making coffee is extremely difficult, and I can only do it once because after I’m exhausted and in pain. Having had someone in the house as I get worse has been a blessing – but now I’m on my own, I have no other option than to figure out how I’m going to manage this situation.
I’ve already tried to start. I’ve ordered new gear for the dog so he can physically help me more – he’s a strong and enthusiastic dog who enjoys being physically challenged (… well, when he’s not busy being happily asleep!). I’m going to get myself a cute little hot water dispenser so I can make my own coffee, I’ve already got myself a high bar stool chair thing for the kitchen, so I don’t have to try and stand when making stuff, and I even use it to bring the sandwich ingredients to the counter, so I don’t have to try to carry them (I can’t lift much of anything, and holding stuff is difficult enough too). I’ve worked out my “independent” food – like the sandwich fillers, picnic food that I can fetch from the fridge (cocktail sausages, little falafels, ready-cooked chicken, etc), pre-prepared salad, humus dip… I can eat all this stuff without too much bother. If it’s too much bother, it causes too much pain, and then I can’t even eat, so having figured this out is a bit of a relief. At least now I know I won’t starve.
The other side of this is going outside without anyone but the dog. Both doggy and I need to go out and walk as much as I can, so we go anyway. He pulls me (and I mean really pulls me) so I can actually go out. I can’t really move my legs, so walking on my own is difficult enough in the house. Going out is not an option unless I have the dog. Have you ever been pulled by a really strong dog? You’ll probably know they’re perfectly capable of dragging you about – and that momentum is what gets my legs moving and allows me to walk. I trained Soul to pull me properly – he has his commands, does as he is told, and knows he’s not in front because he’s the boss: He knows very well he’s in front and pulling because it’s his job, and it’s a job he takes pretty seriously (until we stop – then he wants to cuddle and kiss everyone he comes across!). It’s difficult for him to drag me about – I’m very lucky the dog my friend accidentally brought home to us (he wasn’t planned – she saw him and just brought him back!) was a dog bred to work and able to pull – but he really gives it all he’s got, and even if we’re both having difficulty in getting home, he’ll dig even deeper and work even harder, going up a whole new extra gear. He even knows better than I do if I need to go home – he’s amazing! He works like he’s in a pulling contest for World’s Strongest Dog – and he just might win one of those on the first try after pulling me about for the last few months!
Going out with him gives me confidence. He helps me, makes me feel safe, and I know that anyone who might want to do anything to me will think twice when they see him. He’s 23kg of muscle, thanks to a good diet and pulling me about every day. They don’t know the only thing he’ll do is drown them in kisses, unless they try to actually hurt me. I know if I was genuinely attacked he would protect me, regardless of the fact he’s never been trained do so – that’s just instinct. We go wandering about, going on our routes, and we just trot around on our own. I cope by stuffing headphones in my ears and blocking the world out, and focusing only on Soul and whatever I am listening to. After about an hour and a half of dragging me about, doggy is really tired and is quite happy to sleep it off the rest of the day, unless I need him to help me.
Unfortunately, there comes a time when I must go out alone. This afternoon, I must go to the GP by myself for the first time since I got this ill. Since I’ve been unable to walk on my own (without Soul). I’ve had to book a cab to take me… The practice is only just down the road, and frankly I rather resent the fact I have to pay for someone to take me there. I am fighting with myself to not be angry, hurtful or hateful to myself about this. I feel like I should be able to do it, like I used to be able to do it. Even though I’ve always been overwhelmed by going outside – always been agoraphobic to some level or other – I’ve always been able to use tools and techniques to go places I’ve had to get to. But now, I am in so much pain, unstable on my legs, feeling so vulnerable, I don’t want to go anywhere on my own. This time I can’t even take Soul. It’s honestly going to be a lot of trouble just to get out the house and walk to the car when it comes.
I’m scared of going; it’s going to be hard – physically, emotionally, psychologically. I have learned a lot about myself in the last few months – more than I’ve learned in the last 30-odd years of being me before, so I’m trying to use that knowledge to help myself now, hoping it’s going to help me cope and not have a panic attack or meltdown. I’m so used to going out with Doggy or my friend that I have no idea how to cope with going out all by myself in this state. So, I did myself a favour and downloaded a new album that I wanted this morning that I know will help me feel more relaxed and focus my mind on something I love (the soundtrack to Mass Effect 2, to go with the Mass Effect 3 one I already have… I’m such a Gamer Girl Geek!), and I will also have my books to read in the waiting room on my iPad. I hope this will be enough for me to manage. Even getting some of the anxiety out by writing this has helped a little, allowing me to confront and analyse my feelings, and to be able to accept them and at least try to not fear the fear itself. I hope that if I just focus on the music I will be fine. I really hope I don’t have a panic attack… The last thing I need today is a meltdown from one.
… I knew all this was coming one day… but not quite so soon. I’ve been slowly been getting progressively worse, and probably subconsciously taking more note of it that I probability thought I did, I probably did a lot of things that have probably helped it along over the years. However, I’ve enjoyed throwing myself into the physical activities that I used to love and can no longer do. Horse riding (and falling off the horses) was probably the worst of them – but dancing, walking, singing, yoga… I became absolutely absorbed in each one, to the point that although I miss them, I know I pushed myself and completed enough of what I wanted to do with them that I’m not too disappointed about not being able to engage with them now. On the other hand, the normal things you take for granted. Even writing this has been very painful. My hands are aching a lot, in the top bones and in my fingers and thumbs, especially in my right hand. All this makes me feel afraid of going out there alone, of being at home on my own… I hope I’m going to get through it all in one piece.