I knew when I went for my nap yesterday afternoon that the doorbell was going to ring, I was expecting a delivery, but just couldn’t stay up any longer. For that reason I didn’t put my earplugs in and lay there not truly asleep and cursing every car that drove past the house, especially the one the stopped just outside and proceeded to open and shut doors, boots or whatever it was that kept banging. An hour and ten minutes after lying down, I heard the buzzer sounding and launched myself from the mattress in my usual staged fashion, first slide to the edge and plant both feet on the floor, next raise myself onto my elbows sliding them backwards and tilt myself to my left side as I flip my right hand onto the mattress to start pushing myself upwards until I could bring my left arm into play, being the weaker one it doesn’t have the strength left to bring myself to the point that I can actually push myself into a sitting position and I use more for balance than anything else. I hadn’t really undressed, I had just removed my dressing gowns which were waiting on the back of the bedroom door, set with the arms of one inside the other which allows me to put them on as one. Still half asleep and feeling unsteady I was grateful for the bracing bar that makes the right-hand door of our storm doors impossible to move at all and impossible for anyone to break through from the outside. Normally I hate that bar when a delivery is arriving as most deliveries require both of the storm doors to be open and it isn’t easy to remove, but yesterday it was my friend as I could lean on while I waited for the delivery man to make it up the stairs to our level. This was the first delivery from the chemist that I had had nothing to do with in any way. They had phoned the doctors, fetched the prescription and where now delivering it, two full carrier bags, too heavy for me to carry to the kitchen so I had them place them behind the storm door where Adam could then sort them out when he came home. Two full heavy bags of drugs, that without, I wouldn’t be functioning at all. It says something about your life when the drugs that you need for every day of your life start appearing by the carrier bag full, rather than just the normal paper bag with it’s top turned down, that most of just stick in their pocket or handbag.

It’s not like my drugs have suddenly gone up in quantities, but before Adam fetched them from the chemist for me, often bringing them home over a couple of days as they frequently had to order one or more for me. Once he had each part in the house, well he sorted them out and put them into the store cupboard for me, I haven’t tried to pick any of them up other than in single packs, so when the delivery driver handed me the first bag, a bag that I instantly found pulling was my arm towards the floor, I was shocked. With both bags safely sat on the floor and driver leaving, I locked up the left door again and just stared at the bags, I know they delivered just the same quantity last time, but last time I was more concerned about the details of the process that we had been setting up which took both myself and Adam out of it totally. Any service that is totally free, always has me on edge, there is always that question as to what is in this for them and can a free service actually be a good service, well yes it is. Yesterday, it was just the sheer volume of things delivered that stunned me and their total weight, I did try and lift them once I was alone, but they were just as heavy as I thought and they were going nowhere until Adam returned, I though was going back to bed, this time with ear plugs in, I was desperate to take another hours rest.

When later I saw my meds spread out on the counter top in the kitchen, I could see that the order was totally correct and not actually more than I had before. Anyone who is thinking about using their chemist to take care of the entire prescription process, well I would say go for it, this is so much easier than the hassles that went around just getting my drugs before and best of all, I don’t have to deal with the moody receptionist at my doctors.

I know that I had been blaming the traffic from stopping me sleeping, but the truth wasn’t so easy to brush aside in my second hour in bed, the light was locked out by my eyemask and silence was restored, the real reason for my half-dream state was clear, it was the discomfort in my stomach. I knew well enough from the night before that the pressure levels were rising but I didn’t think that it had reached the stage that I was going to be in so much discomfort. There just wasn’t a position that relieved it, I even raised the top of the bed, but that just made it worse as it forced my ribcage into my intestine, not helpful at all. Despite everything being right for sleep, especially the feeling that I just didn’t know how to stay awake, I was forced into returning to the day. I know that I could have taken a booster, but they take 20 minutes to work and would have only given me 20 minutes sleep before I would have had to be up anyway. I am sure that almost everyone finds discomfort and even pain easier to handle when we are busy, lying in bed just doesn’t work. Getting through the rest of my day to the point when Adam would be home was easy enough, not so were the next three hours. I don’t understand what it is about the settee, but there is one simple fact, if something is hurting, anywhere in my body, it is alway worse when I am sat on it. I used to think that just like when I raise the top of the bed, it was the position that I was sitting it that caused the pain, but it’s not. I have sat in every position possible and the fact is, relief isn’t just limited, it’s short-lived. The truth is something that I have known but sort of forgotten about, a truth from my past.

I used to never just sit and watch TV, I was always doing something, knitting, embroidery anything that kept my busy while I watched, I had put it down to the outside world as that I become bored quickly and needed to be doing something all the time, which there was a lot of truth to, but there was another truth as well, doing something meant my mind didn’t have space to worry about the pain or discomfort that I was in. When my eyesight and dexterity stopped all of the crafts that I enjoyed, I was left with nothing to do other than just sit there hoping that the program I was watching was going to be perfectly riveting for every single second, none are. By 7:30 my discomfort had turned into a pain that I wasn’t prepared to fight and I took a booster tablet, followed 40 minutes later with my regular drugs. By 9pm, I was at the point that every step I took sent shock waves right through me and juddered through ever complaining muscle and organ, my bed was a longed for desire that I reached with joy. When I had taken my meds I decided that I had to do something that would relieve the pain and I took the full measure of laxatives, I didn’t care if it meant I was in for a nights pain, all I wanted was an intestine not stretched to it’s limits. To my surprise, I slept well and didn’t wake until 6:30 and that I am sure was because somehow I had shifted my eyemask and the light coming in over the top of the curtains. The medication that I have been treating as a monster because it normally leaves me doubled up and not far from tears, did nothing until 8 this morning and that was hardly worth mention. I am in for a bad weekend, I don’t have the slightest idea what to do other than repeat it tonight, but I am still unwilling to do so, but I have no other choice.

All those medications, two carrier bags full and not one that is the answer to what should be the simplest process. At least I just have to wait a few more days to seeing the consultant. I didn’t look at my piece I am writing for the doctor yesterday, I did that on purpose in the hope that a full day without sight of it, might help me into getting it completed in a way that the doctor will read, not a daunting two page trawl that will put them off. The really hard bit isn’t the writing, it’s me, I know I mustn’t get my hopes up as why should they be able to fix this when they haven’t been able to fix anything else. Knowing that is also a problem though as I know I mustn’t go and see them with that attitude, it wouldn’t lead to a productive meeting. I know that getting the attitude right is incredibly important, how we come across can be the difference between a doctor willing to help and one who just gets their back up and dismisses you as a pain of a patient. The one thing I have learned after seeing doctors over 30 years of illness is that how you approach things and how you put across why you are there, that makes a huge difference. With the damage that is done to my brain, getting thing across, especially when in what to me is a pressured situation is really hard. The last thing I want it to find myself at the end of this, exactly where I am now and no help of any sort, which is what happened last time. Coping with this is really taking it’s toll on me, one that is destroying me in so many different ways, I know it is down to my PRMS, but it’s knock on effect is that it’s making my PRMS worse, a never ending circle that is just growing and growing.

Read my blog from 2 years ago today – 15/05/13 – Forget me and I stop existing

It never ceases to amaze me the reactions we have to things from the past. Those who have been reading not just this blog, but also ‘Touching Space’ which is at the minute not is in hibernation, will have come across my childhood home ‘Friendville’ and also in this blog as well. It is a building that from as far back as I can remember my life was linked to and to this date……