More snow!!

After dad digging me out of the snow in Bathgate, we have had lots of snow here since yesterday.   I can't believe this is supposed to be Spring.   I love the snow when its leading up to Christmas, but I am sick of it now and just want a bit of sunshine.  Even Seb seems depressed and he is Tibetan, so should like the snow ;-)

The talk to the pulmonary rehab team went well and fuelled some good discussion around the issues.  It was quite informal and I managed to get Seb into a couple of slides ;-)  It helps to lighten the mood haha.   I also had a chat with the pulmonary rehab psychologist, who was really surprised that the CF team does not have a psychologist.   We used to many moons ago, but not had anyone for at least the last 10 years!  It is something that needs to be addressed, because apart from the pre and post transplant journey, just having CF (at whatever stage) can throw up a few problems that being able to talk through would help.

I am feeling a bit sorry for myself today because I woke up stuffed with the cold, and Andrew had to go into work...on a Saturday!  So me and Seb are moping around.  Hopefully it wont turn into anything worse and I am sure some rest will get me back to normal for Monday.   I am only in work on Monday and then have some days off, to tie in with Easter weekend - which gives me a whole week off :-)  Yay!

Snow and Surgery

I was supposed to be giving an organ donation talk at George Heriot school in Edinburgh this morning but the snow scuppered those plans!  I made it to Bathgate last night but there was very heavy snow overnight and the roads to Edinburgh were really bad this morning. The school had contacted me to say it would be safer to reschedule than to try and make it there  - especially as I was due to speak at 9am!  A bit frustrating but better safe than sorry.  Poor dad then had to clear the driveway so I could get my car back out!!  I really can't believe this weird weather so close to Easter!

I had an appointment with orthopaedics at the start of the week about my shoulder.  It's been sore for about 18 months now and I have had a couple of steroid injections into it - the first one worked really well for a few months, then the pain came back and the 2nd injection made no difference.  It's an impingement syndrome, which means the tendon is thickened/inflamed so certain movements which narrow the joint space cause pain - e.g putting arm over head.  I can cope without putting my arm over my head but I also haven't been able to lie on that side for about a year now and it really getting to me!  I am waking up several times during the night, having inadvertently turned over and I think it might be why I have generally felt more tired.  Anyway, the only remaining option is surgery - which will be arthroscopic (keyhole).  It does need a general anaesthetic but I am hoping this can be kept fairly light.  It's normally done as day surgery but they would keep me overnight because of my medical history.   After the surgery there is about 3 months of physio to get the joint moving, at which point 90% will have recovery.  He said the physio is very important so will need to work hard at that.  I have to get it moving as soon as surgery is done though and it's my left shoulder (I am right handed) so hopefully wont cause too much trouble with activites.  Probably couple of weeks off work - I can always get train if driving is awkward!  Although I am a bit nervous about prospect of surgery (think I have had enough to last a life time!) I am also looking forward to hopefully getting rid of this pain and having a good nights sleep :-)

Tomorrow I am giving a wee talk to the Pulmonary Rehab team with my chest physio.  I went to pulmonary rehab classes before my transplant to try and keep some level of fitness, so I was strong enough for the transplant surgery.  Those who have read my blog for a long time may remember me talking about these classes, which were full of old people and me in the middle :-)  It was really important though and the team are interested in the patients perspective of what support we find helpful.   I think its also important post transplant because at that stage we are pretty much left to our own devices, and I think I would have appreciated some guidance on how to progress with exercise after so long being unwell.

Last week it was Andrews birthday - he had to work but I did cook him a steak when he got home and made him a cinnamon and nutella birthday cake - yum!

 

Mutual Respect

I was given a massive bouquet of flowers by a patient, who knew it was likely to be her last appointment before discharge and I was really chuffed!   Most mental health conditions are long term and we don't often get to discharge someone because they are fully recovered.  I don't mean that in a negative way but many mental health conditions are chronic in nature (certainly the conditions in secondary care as opposed to people treated by GP) so it's always so lovely to see someone through a period of illness and back to full health.   This was pleasure enough, but it was also lovely to be appreciated for that help!


Had to split them into 2 vases :-)

I think many people underestimate the impact of mental health conditions on peoples lives.  I might have suffered from a lot of physical ill health in my life but in all honestly I would not swap this for mental health problems.  Many of these conditions make it difficult for people to understand themselves and the world around them, and the stigma that still exists around mental health is astounding.    This is not just within the general public, but within medical and allied health professions.  More recently there has been a spike in patients attending because of difficulties with the benefit system (due to the new equivalent to income support) because they have been turned down, being left financially in crisis and emotionally unable to deal with this.   This can be after a 10 minute interview with someone who has no psychiatric training and makes a snap judgement about that person.   I guess many people with CF have similar problems, because we can look so 'normal' so I can only imagine this is magnified for those with mental health issues.  There is an unfair assumption that some people are lazy, work shy or just not trying hard enough when unable to work.  I wonder if any of us could cope with work if we were struggling to concentrate, to think, to sleep, and to just be?

I know I have gone off on a bit of a tangent  but it's something that is increasingly annoying me lately, especially with all the government changes to benefits.  The people who need the most help are often the ones most vulnerable to this stigma and lack of understanding.  I just hope that I can continue to remain non-judgemental in my career and listen to each persons personal story with the respect and compassion they deserve.

This is what the patient who gave me the flowers thanked me for.  That makes me feel good :-)

Days out!

I am not sure what happened to the rest of February, but here we are in March already!  The weather has been sunny for a couple of weeks now which does make me feel slightly bouncier ;-)

Last week Seb had a day out with Barney the poodle!  They hadn't met before but got on really well and there was no barking or biting - always a good thing ;-)  Barney was very tolerant in letting Seb into his house, especially when Seb proceeded to bring through biscuits, from Barney's bowl, one at a time into the living room to eat in front of him!  Seb also went exploring and when we heard a clatter from upstairs he was found standing in the shower cubicle having pulled out the shower trap!  I have no explanation.  He did however have a great time at the beach and even got his legs wet in the sea, which is a first.

We went to visit some friends this weekend and had a lovely day out at the aquarium!  Their children are so super cute which made the day much more fun!  Normally I am wandering about acting like the child by myself so it was nice to have other children to play with hahahaha!  Andrew took some good pics with our new camera.

Work has been busy and we are making a lot of changes to cover for crisis and emergency work.  I like crisis work but find it hard to cover this and do my own case load when working part time.  I have voiced my concerns about the amount of time I was scheduled to be 'on call' during my working day and this is getting reviewed.  I think part time workers definitely do more than part time in their hours and it is hard to get the right balance to make sure I am doing all parts of the job effectively without having a nervous breakdown ;-)   It all seems to be in hand now though so I am less worried about the changes.  Will just have to see how it goes!

Well I am off into town with my mum now - yay!  Happy shopping to us!!