Routines

I expect that most of us who have myositis, or any other chronic condition, tend to live our lives by a set routine.  This is especially so as you become more affected by the condition, and this then places limitations on what you can do, and the amount of assistance you require.

 

If like me you have carers come to you - I have carers come three times a day - this pretty much sets your routine for the day.  You know that the carers will arrive at a certain time in the day, and therefore you ensure that you are ready for when they arrive.

 

Also if you have a condition which results in you suffering from fatigue, you tend to manage what you do, to ensure that you don't run out of energy - or spoons (if you don't know the "Spoons Theory", I can tell you about this some other time) - too early in the day.  You spread tasks out over the course of the day, or over a couple of days, so that they don't completely wear you out. 

 

If you know you're doing something unusual on a certain day, you tend to prepare for this by not doing as much before hand, to try to save up some energy - or spoons.  But you know that a day outside of a normal routine, will really take it out of you, and you'll spend days recovering.

 

Most days are pretty much like any other.  It makes me laugh when people ask if I'm doing anything special for Christmas.  Actually my Christmas will be pretty much like any other day - partly because I'm not a very Christmassy person - bah humbug - but mainly because if we do too much then I'll just be asleep by mid-afternoon, having worn myself out (much like the rest of the population).

 

However much you try to stick to a routine, there are always going to be the occasional days when you need to do something outside of this normal routine.  Visits to the hospital, visits by or to friends.  Although these are everyday events for most people, these changes to our routines can have a huge impact on us.

 

Occasionally there will be a week when everything comes all together.  When every day seems to be busy, and your normal routine goes out the window.

 

Well this week is one of those weeks.

 

On Monday morning I had a 10.00 am meeting with the Area Co-ordinator from the Care Agency, to conduct my annual review.  This is where we get to look at any problems I might have with my carers, and my care package, and see if there is any more services I require.

 

As any of you who are regular readers of my blog will know, over the last month or so there have been a few problems, which have resulted in me writing a letter of complaint to the Agency, and including Social Services and the Care Quality Commission.  So it was going to be an interesting meeting.

 

Now things started off badly with the lady turning up late.  This is one of my pet hates.  You agree a time for an appointment - so you should be able to turn up on time.  If you're running late, you can easily use a mobile phone to say, you're going to be late.  But there does seem to be an assumption that if you're disabled, then you've got nothing better to do than wait in, so it doesn't matter if they turn up late.

 

At least you should have the courtesy to apologise for being late - but she didn't even acknowledge the fact.

 

We then went through my care package, which is fine and doesn't need any changes.  I'm quite happy with the carers who come to me, the majority of the time, so there are no issues that need to be dealt with.

 

However, when we talked about the overall service I receive and how satisfied I am with this, she didn't seem to think that the poor service from the office - which is what my complaint was based on - needed to be documented on the forms.

 

She then had to do a "risk assessment" to see if there was any greater chance of me being a danger to myself or others, because of changes to my condition, or environment.  This hasn't changed from last year.

 

Finally, as she thought we had finished I asked here about my complaint and what was happening with it.  She said that it was being dealt with and I should hear shortly.  I pointed out that the companies own complaints procedure states that any written complaint will be acknowledged in writing 2 days after receipt, and that within 14 days a full written account of the investigation into the complaint, along with the actions and measures taken, would be sent to me.  Neither of these had been done, and accordingly the company was in breach of its own complaints procedure.  She assured me that this was an oversight and that I would get a letter by the end of this week.  (I'm not going to be holding my breath),

 

So this took about an hour.

 

In the afternoon I then had an appointment at the Diabetic Clinic at my local medical centre.  This is only 15 minutes away down the road, and I go there in my powered wheelchair.  However, Monday was a wet and miserable day, and this meant that I needed to put on extra layers to keep out the cold and rain.  I have a waterproof cover, which goes over both me and the wheelchair, and keeps both dry.  But its impossible for me to get on and off on my own, so Mum has to come down with me.

 

I am early for my appointment, but as usual the clinic is running late, so I have to wait for about 20 minutes before I'm called in.

 

About 2 weeks before my clinic appointment, I had a fasting blood test, and gave a urine sample, so they have all the results ready for the clinic.  Everything looks very good, with my long term blood sugars and fats being where they should be, and my cholesterol levels are within the right area.

 

So there is nothing much to discuss, as the tablets I am taking seem to be keeping my diabetes stable, and we make another appointment for 6 months time.

 

After a wet trip home, I'm able to get into my armchair for a bit of a rest.

 

Tuesday is my day to go to the local community centre - the Douglas Brunton Centre - where I volunteer teaching members how to use computers.  Its good fun, as the people are usually quite interesting to talk to, and its something a bit different one morning a week.

 

I get picked up about 9.00 am and get home just before 2.00 pm.

 

Usually I'd get in my armchair in the afternoon, and recover from the morning, but today Mum isn't feeling great, so I give her a break.

 

Wednesday morning I have an appointment with the Eye Clinic ay Croydon University Hospital.  I have ordered a taxi to take me - I can travel in my wheelchair in London black cabs, as they have rammed access, and as a disabled person I am entitled to a reduced fare, through a scheme called TaxiCard.

 

The taxi picks me up just after 9.30 am and we arrive at the hospital in plenty of time.  I make my way to the clinic and book in and then expect a long wait to me seen.

 

The Eye Clinic is always packed with patients and everyone always has to wait for a very long time.  I cannot ever remember being seen on time.  But it does seem to be badly organised, and a bit chaotic.

 

When I book in, the clerk has to look through all the files to find mine.  They don't appear to be in any sort of order, either alphabetical or numerical. 

 

I have been attending the Eye Clinic for about 4 years.  I have a Macular Scar on my right eye, and they are monitoring this to ensure that it doesn't get any worse.

 

An hour after my appointment time, I am called in by one of the nurses, who gives me a short eye test.  He then has to go and find a more senior nurse to come and put some eye drops in, which will dilate my pupils, before I have a scan of my eyes.

 

The other nurse comes and warns me that the drops will sting - which they don't - and puts them in.

 

I then have to wait to be called for the scan.

 

After about 15 minutes, I am called in and given the scan.  Its only a matter of sitting in a dark room with my head on a frame looking into a camera and a blue light, whilst they look at my eye.  It takes about 10 minutes to do both eyes.

 

I then have to wait to see a doctor.

 

This takes about 15 minutes before I'm called in.  The doctor reads my notes, and looks at the comments from the scan.  Then he has a little look into my eyes.  The Macular Scar is unchanged.

 

However, he says I have the early signs of a cataract in my right eye - thank you Myositis and Prednisolone - but it isn't something to be concerned about at the moment. 

 

He advises that he'll see me in a years time.

 

I leave the clinic and make my way down to the front of the hospital.  I ring for a cab to collect me and take me home.  I'm expecting a long wait, so don't rush to get outside.  I just get out of the door and the cab pulls up.

 

I get home about 12.30 pm, which is much earlier than I expected.  My vision is blurry, I have a headache and I'm knackered, so I get in my armchair and fall asleep for the afternoon.

 

This morning my carer overslept which meant she was 45 minutes late getting here.  I really appreciated that extra 45 minutes in bed.

 

Today I have nothing on, so its very much a day to recover and rest.

 

Tomorrow I have an electrician coming at about 8.30 am to put up some new light fittings, so that will be another disruption to my normal routine, with having to organise the work, talk through what needs to be done and where, and make any decisions.

 

Weeks like this aren't the norm, and usually I'd try to spread out these sort of appointments so they don't all come together, but this week has been unavoidable.  At least at the end of this week I'll know that all these things are out of the way, and I can spend a quiet weekend recovering.