The Furry Monkey

05 September 2006
uclh, london

A new department to see this time. Had to wait as I was a bit early then my name was called for the preliminary tests before seeing the Consultant. This is where the problems started.....!!!

Well actually they started before that as I had to speak to my GP and get them to write a letter as I was classed as a new patient because it was in a different department, I've been going to UCLH for ever (it seems like it!) and now because it's a different department I'm now classed as a new patient. What a waste of time and money. Now, back to the original problem.

I had to have my blood pressure taken and the first time the cuff was put on my hand went red and I said it was hurting - "oh it sometimes does that" was the reply and it was immediately put back on (I've since been told there should be a five minute wait between tests as the reading could be wrong). However she immediately put it back on and this time it was so tight I was almost crying and ready to pull it off. As you know I have a high pain threshold (with all my hospital visits!) and I was ready to give up! My fingers went blue and she still sat there in the chair and just said to me "hold it on". Finally a reading was taken but it was SOOOOO high - never been that high before.

I was told to say that I declined to have one of the tests done and then see the Consultant. After the appointment I had to have a blood test done and was then asked why the other test hadn't been done. I had to have it done anyway so it was a bit of a waste of time. I have been trying to get an appointment for such a long time, why would I jeopardise it when it arrives?!?!? No one in their right mind would.

Anyway, I eventually got home and had a restful evening and to bed.

The next morning, getting into the shower I thought I saw something on my arm and looked in the mirror. There was a huge bruise (photo below!) which was over 3" plus across and very painful. (It was still there over a month later although faded).

The bruise is 3" plus across and the coin is a 20p one for size comparison. Also it was still getting worse the next day.

Everyone is horrified at it and said it shouldn't happen when a CORRECT blood pressure test is taken. I know that as I've had many in the past and never had a bruise like this before. As you can imagine I am now concerned that the reading is incorrect (as I kept repeatedly saying) and it will have to be done again, I just hope I get someone who has been correctly trained this time if it is to be done again.

I'd hate to get there only to find that it all needs to be done again, wasting the three months I've been waiting for the results etc.

07 september 2006
AT Home

Just a small note to say thanks to those of you concerned that my website wasn't online. It wasn't me but a technical problem (well it was someone not doing as they were instructed to be honest).

I'm pleased to say that it is now all working fine and I am back online. I've now got to sort out a problem with the hospital when an email didn't go through because the access was withdrawn.

Speak again later...... :-)

11 september 2006
royal national orthopaedic hospital, stanmore

Here I am at the Orthotics Department in Stanmore. It's way out the back in the middle of nowhere. It looked like we were going into a field - definitely not a clinic. Anyway we found it in the end and I booked in at Reception.

I turned round, put my bag on the chair, picked up a magazine to read as there was several people in there and I thought it'd be quite a wait and my name was called....!!! Amazing....

So off I toddled to the Orthotics Department and gave my details again (communication is severely lacking in some NHS departments!). He took details of what had happened so far and then said he'd go and see what was required. He came back with some gel insoles for my shoes and put them in. He said he was sorry I'd gone all the way to Stanmore when I could've got them in Bolsover Street. So why did they refer me back to Stanmore then?

I had to go through the whole rigmarole of going as a new patient because it was a different department only to be told I could've had the same thing at Bolsover.

Still it was a nice trip out and the driver Steve was very good and we had a laugh along the way.

28 september 2006
mr b's hospital, bolsover street, london

This is a Physio appointment. When I got there they were having lunch so I had to wait - not too long which was good.

She then asked about my arm and I said "no it's my leg as my arm has been sorted out". She said Mr B had referred me about my arm! So she couldn't treat without being referred back and then back again to them stating it was my leg.

However she did an assessment and said my legs were weaker than she though. There is not much ooommpphhh there I can confirm that. She had me walking up and down and then tried a step (gave me exercises to do as well - not many though only three at a time depending on pain). She is also going to try to get me onto sticks next time which will be easier. More difficult to use in the outside world though as there is nothing to keep them upright like crutches!

It was a good session though and will help make things easier. It is getting easier with time but it's only time going by that is making it that way, it's taken months to get referred for help and it's similar to calling an IT Helpline, by the time they answer the phone you've lost the will to live and have sorted it out yourself.....

30th september 2006
crest luxury pamper day, shepperton

Oh boy have I been waiting for this for a long time!! =)

It has taken a lot of work with a team of good people all working together to ensure that it happens for the benefit of patients and carers. Mum and John (yes I persuaded John to come along this time!) came with me. Auntie Mairlyn and Sally also came along for some pampering too.

I missed the Relaxation Class as I was registering people in (sitting at a childs desk took me back I can tell you!). It was SO busy and we had more people turn up without booking in advance, even though we said on the form you have to book in advance. Note to self: make poster clearer next time!

I then went to my Workshop (Holistic Life Coaching) which helped make things clearer in my mind as to what needs to improve in my life (health being one of them!). It was very interesting as I've not done it before.

We then had a nice buffet lunch (thanks to Joan and her team!) of healthy food and fruit (my favourite!). We we then sent to our therapies. This time I was having reflexology.

It was done lightly due to the Lymphoedema and Achilles Tendonitis. Christine (my therapist) mentioned that it was quite hard before starting, that was the fibrosis caused through Lymphoedema. At the end it was not so tight and felt SO much better than when I went in.

I did get cramp though and had to stand up fairly quickly, which was a bit of a problem with creamed feel (peppermint oils too). I managed to stay upright though and it disappeared after a while. It made me nervous though as once it happens it invariably happens again!!

After the therapy my feet and legs felt wonderful, Christine said it should be done regularly but if it takes the NHS 8 months to send out a pair of stockings it just isn't going to happen is it. The patient suffers again. I'll have to try to save up and get it done privately as it seems to be the only way.

John said he felt better after his massage which is what I hoped it would do. On the Sunday I asked him how it felt and he said "wonderful" - his neck, back and shoulders felt a lot better.

So all in all it was a wonderful day and sitting here 4 days after the Pamper Day my feet are still feeling wonderful.

Oh yes, talking of IT Helplines. Who does everyone use as their ISP as mine is awful at the moment and when I rang the Helpline I was put through to Sanjit in India and he gave the standard "have you tried turning it off and on again" line and then said "oh it's not us, it's down to your equipment"....arrghhh!!!

If you have a good, reliable, reasonably priced ISP with good download limits and speeds, let me know asap....!!!!

Not having emails and the internet is like losing your right arm for me. Perhaps I should see IA (Internet Anonymous!!) as a confirmed addict....