A day of mixed feelings

Ho hum. Not really sure what my overall feeling is about yesterday. I guess i'd summarise as some good news, and not such good news.

Yesterday was busy. Woke up before my alarm courtesy of a cat laying on my chest, who then had decided to give me my morning wash! I woke up rather suddenly when the raspy cat tongue started licking me! Eww!!! Cat biscuit breath. Yuck.

After more pleasantly waking myself up with a proper wash (as opposed to the Billy the cat’s interpretation of a facewash) and a nice coffee, I drove home, and sorted out a few bits including again chasing the DVLA for the official result of my driving licence medical enquiries.

I have apparently met all their requirements, and can drive officially again! :)

I’d had about 18 months where I couldn’t drive due to my double vision as well as because of the neurosurgeons attacking my skull with a drill last summer and then replacing my malfunctioning VP shunt at the end of last year. Once the time ban after the surgery had passed, and my eyesight had improved back to normal – I had spoken to the DVLA enquiring about getting my licence back. They’d turned round and said, “Oh – well if your neurologist and insurance is happy, you can drive whilst we conduct our investigations.” Seemed a tad bizarre to me at the time, as the results could have meant they had turned round and told me that actually I wasn’t safe after all! However, as it took over 4 months for them to do the relevant letters and repeating the eye investigations to their liking – I guess I understand why their policy is like it is, and was glad that they said I could drive in the meantime.

Anyway... they’ve now given me the official go-ahead, so I can now think about a new car. I want one that’ll be easier on my joints than my current one. Any suggestions? Imagine I'll end up going for an automatic :( with cruise control. Might investigate the possibility of adaptations for steering wheel accelerator and brake controls, as even with going for the automatic option, it's still putting all the pressure through my bad hip, and my more troublesome knee. I need to find the best way of maintaining the ability to drive, whatever happens to my hip - yet driving is causing me quite a lot of problems just now...but the car is absolutely essential in getting me around.

I had a whole range of appointments today. Physio was ok, had a combination of acupuncture and more traditional physio treatments. The physio was a little shocked by the size of my swollen right knee though. Lucky she's not here now...as they are now both looking very red and swollen :(

One of the respiratory nurses gave me my 4 weekly xolair (anti IgE) jab whilst I was waiting for clinic. The clinic appt was ok, my asthma is pottering along in a steady state of instability...if you get what I mean! I didn’t really get the answers I was looking for with regard to my questions about my summer holiday. Well, I guess you could say that I just didn’t get answers at all, rather than just the ones I wanted. The response was – “we’ll discuss it in a fortnight!” Hmmm. Not sure if it was just because I was meeting the Registrar, as the consultant was away – or if that’s what the consultant would have said anyway. I suspect the latter. Understandable, but frustrating at the same time as prevents me planning anything.

The rheum nurse appointment was good. I’d not really known much about the role of a Rheumatology specialist nurse before – but it certainly seems quite extensive and useful for the patients. Rheum will be taking over the responsibility of my methotrexate prescribing and blood monitoring. Just as well, as I got the distinct impression that the resp team were not too happy with the dose changes and the suggestion of swapping to subcut injections to try and prevent the awful nausea and vomiting I’ve been getting with the tablets. Am glad i've got the chance to swap - as it's really been miserable. The nurse went through the technique for giving the injections to myself... thankfully I was reassured that I did have it already mastered! I am pleased that they are actually going through the process, treating me like a normal patient, rather than assuming a certain level of medical knowledge or skill. On the whole, whilst I like to get involved in fairly detailed discussions about my medical management - I prefer the doctors and nurses treating me to not assume anything and to just treat me like any other reasonably informed, educated, interested patient unless I ask otherwise..as when you find yourself in the patient's role-sometimes the last thing you think about is applying the knowledge you learnt at medical school or in work, or if you do - it's often not with the most common sense approach! Whilst I was there, she calculated my disease score – I was quite shocked when she told me how high it was, especially given my pred dose at the moment. She then explained the DAS-score’s role in inflammatory arthritis management. Much higher and I’d have have met the threashold for anti-TNF treatment for my joints. :(

I came away a tad unhappy with that, as unless the methotrexate works wonders...when my pred dose comes down, my joints are likely to flare like they have done previously – I may have to make difficult decisions as it's not a drug to take on lightly.

I then drove home via the scenic route, with some rather loud music and the windows open to try and clear my head a bit. Sorted some things out at home, and headed back over to Nottingham – I’ll soon be able to navigate the A52 with my eyes closed [not that I’m planning on trying that! ;)] I’m staying with the cats again prior to my MRI on Friday. Had a pretty rough night (as very sicky with the methotrexate again. Can’t wait till those injections arrive! ) which is why I’m updating my blog at this time! Am glad I’ve had the cats for company. Somehow the fact that there’s another creature awake makes it easier to deal with.

Hoping that I’ll be able to catch up with a couple of friends today who are working at the same hospital I’m going to for my scan, which will be great...I just need to make sure I can stay awake! Time to try sleep again, methinks....

.....sleep still proving elusive, so two little titbits of info for you:

• Next week, it looks like i've got all of my 5 appointments into two days, so whilst they'll be busy days... I can actually have days where I'm not visiting a hospital! Yay! :) I guess that sounds like a silly thing to celebrate.. however, in the past 2 weeks, I've spent 9 weekdays going back and forth to hospital appointments and the only reason it was 9 and not 10 weekdays was due to the bank holiday! I think 3 weekdays off next week is therefore due cause to raise a smile! :D
• I got my OU computer marked assignment back for my digital photography course.... 95% Woohoh! :) Am absolutely stunned. I ended up doing some cramming of a lot of weeks theory, because I'm a long way behind in the course schedule. Guess I got the whole studying technique thing polished properly during those med-school years after all, and that it is a transferable skill! Shame that won't apply to the practical aspects of the course - I've got a serious amount of catching up to do before the end of course assignment...I hope my body lets me!

Sorry for the rambling nature of this post.... I think it reflects a bit how I feel after yesterday!