Skip to main content

Pain clinic referral

I started writing this yesterday morning but didn't get chance to finish it as I ended up going to bed yesterday afternoon around 4pm feeling totally shattered and sleeping for 12 hours straight. When I woke in the early hours I had sweats, felt sick and dizzy. I got up to fetch a drink but felt like my legs were made of lead so I went back to bed and that's where I've been all day. The only times I've been out of my pit are to go to the loo and to hook up because I didn't have any feed last night. The sicky feeling has died down but I have the aches all over and have woken up a couple of times with my pjs drenched from the sweats. Hoping it's a 24 hour bug as it's Bestie's baby's christening on Sunday and Hubby and I have the honour of being Godparents so I need to be well enough at least for the service. Anyway, back to my post...

I've been waiting to hear from University College Hospital in London after being referred there from the pain clinic at the QE2. So when I opened a letter this morning and saw it was from them I got all excited. But that was short lived when I started to read it. 


I could cry. I waited months to be seen at the pain clinic at QE2 and now it looks like I will be waiting for months to be seen at UCH. I wonder what will come first- an appointment from UCH or another appointment for a PIP assessment as I should have been having that today. 

My worry is that while I wait to be seen by a pain specialist the only person managing my pain is my GP. And because they're not a specialist their only answer is to keep increasing the doses of my painkillers. Which is exactly what happened when I went last week. The dose of my fentanyl patch has gone up again but I must be becoming tolerant because I haven't really noticed. I'm hoping that UCH will explore alternative methods of pain control like acupuncture because the thought of being on ever increasing doses of opiates for the rest of my life is a frightening prospect. 

NB x

Comments

Popular posts from this blog

Home today?

The antibiotics have finished now and last night my Hickman line was used for the first time. So far it seems to be working fine and if the doctors are happy with it when they do the rounds later this morning I will be able to go home. Today! Yay! Of course I'm excited to perhaps be going home but I'm also relieved as my poor veins have just about had it. I never really have any decent veins in my hands and arms and the few that can be used have been well and truely pricked to death. It's got so bad that I'm now having cannulas put in my feet. And yes, it did hurt.  Hopefully later I will be packing my bag and going home to Hubby and the kids.Unfortunately everyone is at work today so if, no, when I get discharged later I will have to make my own way home. Nottingham has a really good transport system, including a tram stop at the hospital but I don't think I'm up to using public transport today. I'm going to splash out on a cab that will take me door to doo...

The spoon theory

Have you heard of 'The Spoon Theory'? No? Neither had I before I got ill. Why would I have? I didn't spend my time trawling through the internet in search of lotions and potions and pills that might just make me feel a little bit better,  because I was well. I was out living life and having fun.  Don't get me wrong. I'm not saying that I don't have fun any more. I just have less of it, with fewer people and without the aid of alcohol!  The spoon theory was written by Christine Miserandino and she asks that when you reference the theory you add a link to her website, so here it is:  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ I  saw this tonight on Facebook and thought was a brilliant visual to help you understand the 'theory' (and my life) a bit better.  That really is what it's like having a chronic illness. But the trouble is you never know how many spoons you have when you wake up. My  body likes to play trick...

Holiday from hell

My first week in Cornwall was amazing. Me, Hubby and the kids spent the week near Porthleven along with all Hubby’s family in a big house with its own pool and hot tub. The kids had a great time with their cousins, we celebrated Big Girl’s birthday, went to the beach, ate together, played games in the evening and just generally had a wonderful time. It was the holiday I had dared to dream about while I was in hospital amd I couldn’t believe I was well enough to enjoy it. No, I wasn’t able to eat and drink but that was a small price to pay to be making memories with my loved ones. At the end of the week we packed up the car and drove to St Ives where we had booked a fisherman’s cottage one minute from the beach with my parents. My sister and her husband would be staying nearby and Big Girl’s boyfriend and his family were also staying in St Ives at the same time. I’m good friends with his Mum so I was really looking forward to having a great second week with even more of my favourite peo...