Saturday, 2 July 2011

I Dreamed A Dream

As last week I did not feel 100% yesterday. It seems that every time I get my dose increased the following day I'm left feeling sickly, shattered and with a nagging headache. It must be the effect of the meds, I cannot think what else it could be. If it is and it follows the same pattern as last week I will be OK today and start noticing an improvement by Monday. We will wait and see.

Did a load of washing today including a white wash with all Laurence's white work shirts in it. Unfortunately neither he nor I noticed he'd left a black ball point pen in one of the pockets. At first glance I thought we'd got away with it but closer examination revealed several black marks on two of the shirts. I've treated them with every stain remover I've got but they stubbornly refuse to move. I will keep trying but don't hold out much hope.

I watched the Murray match with hope in my heart. Indeed the first set had me visualising Murray holding the winners trophy. I could even hear the crowd but it wasn't to be. Half way through the second set and he made a mistake, just one little mistake and he swiftly went to pieces and the dream died another painful death. The sad thing is I think he could do it, if only he had the belief in himself.

To go or not to go that is the question. Forms for the annual PHA conference popped through my door yesterday. I have always wanted to go to one of the conferences as I've heard how good they are and this year it is at Heythrope park, a place with emotional connections for me and Peter. The trouble is that there will be a lot of people there whom I don't get on with. Unfortunately the PHA has it's fair share of people who seem to think that they have right to lecture people on how to live with PH and what to say or not say. I got into trouble with these people so many times for going into too much detail when talking about procedures I had or hospital visits. This is a medical forum where, I thought, you could describe things and ask advice but some people appeared to be unusually squeamish. They would go squealing to the forum moderators and my post would be pulled, again. What the moderators never knew or saw were the vicious e-mails that accompanied this squealing, they would never pm me because it would be easy to forward to the moderator to show them what these people were really like. In the end I cracked and told one of my tormentors exactly what I thought of them, in public, which got me banned. Maybe I should have passed on those emails, trouble is none are in their real names so I'd have difficulty proving who it is. Anyway the long and the short of it is, do I really want to be shut up for a weekend with people like that? I will have to have a long hard think about that one.

Tomorrow I'm biting the bullet and instead of watching the Wimbledon final I'm going to rebuild my computer. This is a task I take on usually once a year but due to circumstances beyond my control I have procrastinated until it is now approximately three years since it's last rebuild and to be honest a snail could move faster. I've back everything up and am ready to go and if I can't find something more important to do Sunday will be the day. So if I'm not around on Monday you will know why.

Went out on our never ending quest to find a storage solution for my drug mountain. We decided IKEA might have the answer so went to the MK store. Now we don't go to IKEA very often, the last time was around March and on that occasion we asked for a wheelchair and got it without any problems at all. This time we once again left my wheelchair at home in anticipation of filling the boot with goodies. Because it was very busy we had to park some distance away, all the disabled bays were taken, so Peter went off to get a wheelchair while I waited in the car. I could see by his face as he marched back across the car park not all had gone to plan. My first thought was that they had all been taken but this wasn't the case. IKEA are now demanding that in exchange for a basic, push along wheelchair you had to surrender you car keys. This meant that in order to get me into the store Peter would have to come back to me to collect the key then go and fetch the wheelchair leaving the key with the store, collect me from the car push me to the wheelchair hire to collect the key, go and lock the car, return the key and then collect me before even doing any shopping. He'd then have to do the whole thing in reverse, on both occasions leaving the car unlocked and unattended for a indeterminate period of time, with shopping in the boot. Having explained the procedure to me we both agreed to 'sod that for a game of soldiers' and went next door to ASDA. In ASDA we asked at customer services for a key to a motorised scooter and got it without any questions or having to leave anything behind for security. We also found the idea solution to our storage problem for a grand total of sixteen pounds, no doubt a damned sight cheaper than anything IKEA had to offer. I will be writing to IKEA. I will let you know how I get on.

Paid a visit to MK hospital today as I had a little bit of a crisis with my dressing. Healthcare had sent me two boxes of dressings to cover the entry site which was more than enough to last until my next delivery. Or so I thought until I opened the second box this morning. Inside were not the small neat dressings I was used to but huge, thick post op dressings. Obviously something had gone wrong and they had been mislabeled. This meant I had nothing to cover my site with from the next change due tomorrow. As we were going to MK we thought we'd call in on Boots there as it is huge and logically more likely to stock iv dressings but they didn't. The only thing they could advise was a trip to MK hospital. We decided to give it a go after much humming and ahhing as I really didn't know what else I could do. We expected to be greeted with a stonewall at best and a long, long wait at worst, our experience of our local A & E has not been great. First point in their favour free disabled parking right outside A & E. Second point in their favour helpful staff. Third point in their favour a full pack of dressings given without argument. Fouth point in their favour in and out in under twenty minutes. They couldn't have been more helpful and told me to come back if I had any other problems and they would be more than willing to help. I will certainly be keeping that in mind.

So another phone call to Healthcare At Home on Monday, can't say I'm being filled with confidence regarding their service but what choice do I have? I will remain optimistic and hope it all settles down soon.