So for the first time since this shit storm started I broke down in tears. For so long I have tried to hold it all together but I feel like I am failing miserably. I know things could be worse, I could be dying and yes I know there are people out there much worse than me. I feel guilty that I have allowed this to consume me but when your days are mainly spent lying down wearing dark glasses because you can’t stand the light there is far too much time to think.
In all the years I have been sick, recognizably sick I have never felt so desperate for help. Today (Thursday) I rang the doctor's surgery again because I hadn’t heard back from my gp the day before. Not only am I dealing with this suspected CSF leak but the politics of the medical profession. It’s a tight rope, I need to push for treatment but in such a way that I do not piss anyone off. I know that there is nothing that my gp can do, he can’t wave a magic wand and make it all go away. I need to see a specialist. However that is another problem because so far my referral has been ignored by the hospital.
Last night when dealing with a non health related issue I found out that the hospital that I have been referred to is refusing 9-10% of all referrals. 9-10% doesn’t sound like much but when this hospital is the largest hospital in the southwest, 9-10% could easily run into hundreds if not thousands. Referrals are being refused on the flimsiest of reasons and the decisions in some cases are being made by non medical staff. I am concerned that I may have fallen into the 9-10% for no other reason than I am not within that commissioning care group (the new fancy name for a healthcare trust). My gp was very concerned that I hadn’t heard from them and was now going to be chasing them up. I have to contact them next week if I haven't heard anything by Friday. Unfortunately my GP is on holiday next week so I will be reliant on the surgery staff to chase it up for me should I have not had any contact from the hospital.
Whilst I was talking to my GP I ended up breaking down and telling him that I didn't know how much longer I could do this for. Since Monday my condition has worsened and I have spent very little time upright. The pain doesn't really respond to medications and I am going through Oramorph like there is no tomorrow. Initially when I was diagnosed I could live on one pillow when lying flat now however I cannot have any pillows and I found most relief when lying flat on my back with my legs in the air. The only place I can do this position is in bed, as this has a nice high headboard and is comfortable enough and big enough to share with 3 dogs who always want to be with me. Poor Nurse Frankie needs a serious amount of overtime paid for all the hard work has been put in looking after me.
I broke down and found it very difficult to stop crying once I’d started. It has been the first time in all this time that I had allowed myself to cry. I try my very best to hold it together whilst Jay is around. But it's been weeks now and something has to give. My GP was sympathetic and told me he knew it must be very hard for me at the moment. As I said before I know that there are people worse off than me in the world. I have great sense of relief now and maybe finally things will start to be moving forward. I have friends, family and the love of a good husband, where many people have to fight their illnesses alone. Crying felt good, I needed it I have been bottling up my emotions for too long.
As I said this has been the worst week so far. As I had a good weekend I believed naively I may have turned a corner and started to self-heal. Monday's escapades of helping a friend complete her CV put me back to the Thursday when I collapsed. Everyday immediately on waking I have had pain, where as before that I would have had at the very least an hour or two before the pain kicked in. At some points over the last week I have had numbness in my right arm, intense photophobia, pins and needles in my face and much more ptosis (more dramatically) than I have had in a long time.
So after a day of feeling sorry for myself and having a cry I found the following morning I felt different. I no longer felt as if a black cloud was hanging over me. Physically nothing was different, I still had the head and neck pain but I felt able to cope with it. It had been a horrible week but I knew that the week would probably follow its normal course and the pain would start to ease up again, which it did. I actually managed to do (when I say do it was more like observe) things I wanted to. Hubby and I spent the two days he had off sorting out the garden, potting up plants. It is amazing the medicinal powers of a good cry and some sunshine.
The garden looks much better now and had I been thinking straight at the time (my cognitive ability declines the longer I sit up) I would have taken some pictures. We have rain forecast for the next few days and nothing ever looks as good in the rain. The garden as long as it survives the onslaught of slugs and snails will be looking even better in a few weeks time when the plants have grown, I will take some pictures then. We have chosen flowering herbs for a lot of the pots as they will provide colour all year around and bloom during the summer months. I am particularly enamoured with the Indian trailing mint, a plant that I didn’t even know existed until I found it online. It has been paired up with trailing Rosemary in hanging baskets, with this species of mint unlike others it’s will not crowd out the other plant. It smells absolutely divine, like all the herbs which was another reason why we chose herbs to plant.
Hubby and I are the least green fingered people I know, we kill plants rather than cultivate them. So we were very surprised when my mum pointed out that our Borage had self seeded, we now have 12 Borage plants waiting to be big enough to be potted on. The wonderful thing about Borage is that a) the bees love it b) the flowers are edible c) the leaves can be chopped up and served with cabbage. We have chosen plants that are all bee friendly, it is something I feel we should all be doing as without bees the human race would be in a very precarious position.
We also found out that we had parsley plants growing everywhere. I had assumed these green shoots were weeds masquerading as parsley. My parsley plant had flowered, then died last year after growing to the size of a small shrub. It was one of the few herbs I hadn’t managed to kill in the garden. So hubby set about carefully digging up the plants and potting them on. Our garden actually looks like a place where people actually grow stuff from scratch with all our little pots lined up on the garden table. I am also trying to get some sunflowers to germinate as I would love to have them in the garden.
As I expected there is still no news on the hospital front, it looks very much like I am going to have to chase this referral up again. Due to suffering from quite a bit of cognitive confusion, I am not exactly sure when my gp made the original request. I am guessing it was about 4 weeks ago. All the days have merged into one, I know this started the week after Easter, I should say I recall this started after Easter. I can’t be trusted to have that accurately in my head. It does seem like I have been waiting an age for this appointment but at the moment I feel like I can cope again, the world doesn’t seem such a dark place anymore.