Carers Matter!!

Wow it’s nearly March and approaching hot weather. I hate hot weather mainly because I have self harm scars on my arms and legs. This means trousers and long sleeved t shirts in even the hottest weather. Also I’m quite fat and don’t suit summer clothes anyway. So I cling to my hoodies and jeans as long as possible and adding on a nervous sweat problem, summer is not great. Summer also is when everyone goes on holiday – so my parents are going to Italy, one of my carers is going to Cornwall another to Devon. It doesn’t half mess up my rota and you know what a change in times means to someone on the spectrum. I grudgingly admit people need holidays, just bear in mind what you’re doing to me.

Not that I can fault my carers apart for the need for holidays. I have 16 hours support a week half by Mind and half by the NAS. So some days I’m mental health, others I’m autistic. My weekly routine is pretty strict. We pretty much do the same every week, apart from one Tuesday a month when we start early for the Clozapine clinic. Monday is shopping and bed sheet changing, Tuesday if the weather is nice I like a round of golf. If the weather’s not great like it has been this winter we go into town for shopping and have even done a museum. I love seeing all the beautiful things and also sharing my knowledge with someone else i.e. my carer. This week we are hoping to do the geology museum, however I also need to get mum a Mothers day present. Wednesday is my least favourite day – shopping and flat cleaning. I’m so bad at cleaning I must confess my mother and father come about once a month to give it a good scrub down. Thursday is cooking tea with a carer’s help so I do something a bit more interesting. So I get a lie-in on a Thursday. Then Friday we pick up some lunch and dinner from the shops then have a half hour golf lesson. Also, once a month Mind provide a carer for four hours on a Saturday.

So that is my week. Most of my care takes place in the morning so I have afternoons to read, listen to music and play on my ipad. Probably the best thing about having support is the company. They are guarded about their private lives but I do get to find out in particular about the trips and things at NAS Mildenhall. And one of my support workers comes from Newmarket and is dead into horse racing so I hear a lot about that. One male carer who doesn’t come that often is into the same type of music as me so we always have a good chat. In fact most of my carers are into music. Sadly of the Ed Sheran variety, but it’s a start.

I don’t know what my life would be like without carers. I would find it very difficult to do anything at all but stay in bed. My carers encourage me. They are used to hearing me say that I feel nauseous and very anxious. They don’t disregard it but just say stick to your routine and let’s get on with it. I sometimes feel cross and worry that they don’t understand how bad I’m feeling, but actually it’s usually the right thing to do and I’m pleased with myself when I’ve managed to do things.

Sometimes I worry that I don’t make the best of my team because we often find by lunchtime that we’ve done everything but we watch the news together and I really enjoy having someone to share that with. And I do worry a lot about them getting bored. But when I say this to people I know they tell me that it isn’t my job to entertain them. When I first had carers I had this one who was all about filling all the time and doing activities non-stop. I found this regime so awful that I became suicidal because it was too intense. She had to stop seeing me because she was ill. My new regime which I’ve had about two and a half years is much happier. Each person brings their own personality which provides variety and I wish I could buy them Christmas and Easter gifts to say thank you. So I just want to say thank you to you all for making my life a little more bearable.

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