Striking a Balance

Life seems to be on a reasonably even keel at the moment. I had a clinic appointment last week and although everything is at a lower level than before, they were happy enough with me. I have started to adapt to the lower lung function and unpredictable energy levels, so through both trial and error I am learning my new limitations. I have found it difficult to adjust at times because in my mind I can still do everything I could do 6 months ago, but my body will soon remind me otherwise. I think it's just a case of learning to strike the balance between doing as much as I can without overdoing it, and this is often easier said than done.

On the subject of striking a balance, I had a meeting with my work today to update them on my progress. I think the effort required just to get ready this morning and drive myself the short journey made it even clearer that I cannot possibly go back at this stage. I did enquire about trying to do some work from home but this isn't really a feasible option, and to be honest I was probably relieved to hear that as I would inevitably put myself under pressure. A more realistic and probably useful idea is that I set some time aside every week to keep up to date with work related things. There are lots of online modules I can complete and journals I can read to keep my mind involved and my knowledge fresh, so I can possibly make a start with that idea. Right after I finish watching day time TV...

For the Seb fans, here is another random escapade. Yesterday I was pouring a carton of cream down the sink, as it had been open too long and I get funny about these things. Anyway, I went outside immediately afterwards to put something in the recycling box and I notice Seb's furry bottom sticking out from between the boxes. I move in closer to see what he is up to, and realise he has his mashed his head under the waste pipe from the kitchen sink and had been lapping up the cream as it poured out! Goodness knows how long he has been up to that wee trick, but Andrew will be extending the pipe to prevent him doing it again. His taste for cream did however also remind me of the time my neighbour took him a walk when he was a puppy. Apparently he spied a man eating an ice cream cone on a bench, and before the neighbour realised what was happening, Seb had jumped onto the man's knee and started licking the ice cream. Not surprisingly he didn't much fancy finishing the cone after that. Some people can be so fussy..

It's not all about the lungs..

The ongoing garden project took us on a trip to a new garden centre at the weekend. We were attempting to select some plants for the rockery, although due to limited knowledge in the field of horticulture, we managed this task based on "Oooh that looks nice - does it say 'hardy' on the label?" In my humble opinion this would seem as good a method as any. My friend Fi has become my garden guru and is giving me lots of advice, and politely answering queries such as "the plant went all brown and the leaves fell off - do you think I didn't water it enough?" My aunt also gave me lots of cuttings last summer which have been sitting in small pots on top of the dogs kennel for nearly a year now. Now I just need her to come back and tell me which are actually plants and which are just weeds that have managed to grow in the 'longer than expected' intervening period. I may sound like a lost cause, but we all have to start somewhere...

Seb has just returned from a weekend break at mum and dads. He is pretending not to have missed me at all. Chances are he actually didn't. I think he has too much fun when he stays there and gets spoilt rotten. Apparently they were both gardening on Saturday and since the front garden is not fenced in, Seb had to stay on the veranda area, which has railings around it. Dad felt so sorry for Seb that he positioned a garden chair next to the railing so Seb could sit on the chair and watch them in the garden. I'm surprised he didn't pour him a long cool drink to sip on as well, although I did hear that Seb was enjoying drinking from the water fountain, which he clearly thought was there for his personal use. Also of much amusement is the fact mum was running (yes running) with Seb on the lead (he cannot be let off a lead, as he would just wander off). The last time I saw her running, she tripped and managed to do a forward roll without letting go of Seb. Now that's what I call quality entertainment.

I had a lovely day yesterday visiting my old flat mate (hello Anna!) for the afternoon, and it really lifted my spirits. It can get a bit tiresome having the same daily routine and I feel recently my thoughts have been dominated by health, and lack of. Seeing friends, especially those from a time when life seemed simpler and more care free, can help put things back into perspective. I suppose it helped to remind me that there is more to me than bad lungs and the quest for making them less so. I did actually have a life before this, and not much of it had anything to do with lungs (apart from the breathing part). It's hard not to become very focused on the idea of 'when I get my transplant, then I can...." and in the meantime forget about living right now. I just need to sometimes remind myself that its not all about new lungs and new beginnings; sometimes its just about what is happening right now, appreciating life as it is, and making the most of today.

Onwards and Upwards

Thank you for all the lovely supportive comments on my last blog entry - it really helps to know that my friends and family are there for me during both the highs and lows. You will be pleased to read that this entry will be a 'high', although this is largely due to the Chocolate Brownie Sundae containing 38.9g of sugar (approx 8 tsps) I have just consumed. Sugaaaar Rush!

Yes, I am trying to put some weight on again, and this time I used the method of adding lots of random deserts to my online Tesco order based purely on total number of calories. The chocolate brownie sundae has an amazing 780 calories in one serving so that was first in the basket. I don't even like sundaes but with that many calories I figured if I could even eat half it would be a roaring success. I suggested to Andrew that he could help me eat it, as it did really look rather daunting with all its chocolate mousse, brownie pieces and fresh cream. Funnily enough he agreed to help with little persuasion. Between us we managed to tackle the beast and polished off the 780 calorie, 165% of daily recommended saturated fat dessert. The initial glory of a job well done soon gave way to us both lying on the sofa feeling rather queasy and all together not very well. It's rather fortuitous I added that bottle of Gaviscon to the shopping list then.

I have been getting out quite often with the portable oxygen. Unfortunately I have found the cylinders too heavy to carry myself, so either Andrew or mum has to come along as professional oxygen cylinder carriers. This does take a little practice however, as clearly my tubing is connected to the cylinder, so I am therefore connected to the other person. A strange shuffling dance ensues whereby we slowly move around the shop (or where ever) with me intermittently shouting directions "left ahead" "over to that shelf" "Stop here" "Ahhhhhh" (thats me being pulled by the nasal oxygen specs when the other person walks in different direction). All good fun though. Hopefully things will get a bit easier (in fact I thought today I wasn't quite as breathless) because I would like to get out to the shops on my own again and be able to walk around a bit more freely. Always good to have a goal to aim for - and if all else fails I am trying to build up some arm muscles so I can maybe carry the cylinder myself.

I have been signed off work for another couple of months, and then I will take it from there. At the moment I would not have the energy to manage at work, and to be honest I was struggling significantly for quite some time before this. Whether I do get back to work before my transplant looks doubtful, but nothing is impossible. I will just concentrate on the eating, exercising and such like for the next couple of months and see where I am at the end. Fortunately I am not yet bored (mostly because mum is keeping me busy by making sure I get out of the house and don't become a recluse) but I have a few ideas for things to keep me occupied should my brain begin to wilt.

Seb is at least pleased to have me around most of the time, or at least I think he is. He likes to act a bit casual about these things. He prefers hanging out with Andrew at the moment because he is digging in the garden (creating a rockery) which is far more interesting. Seb follows behind, poking his nose into each new hole dug and generally making a nuisance of himself. If all else fails he likes to run off with a gardening glove or anything else he can find lying around. Mum was trying to hang washing out today and stopped to talk to my neighbour. When she turned back the peg bag had disappeared, although there was a small trail of coloured pegs leading to the culprit. He hasn't yet worked out the concept of covering his tracks, although I suspect its only a matter of time.

Butter wouldn't melt...

The Ripple Effect

I haven't really been blogging much recently, because I feel I am just going over the same old ground health wise and am even boring myself with my gripes. However if I think back to the reason I started this blog, it was to record the journey towards transplant, which has to include both the ups and the downs. So today I apologise, because unfortunately this is more of a down.

My thoughts feel scrambled and haphazard at the moment, as I try to adjust to this new place I find myself in. The breathlessness continues to be ever present and its resulting impact on daily life is increasingly frustrating. Simple tasks, like moving around the house and getting dressed in the morning requires a concerted effort. Who would have thought putting on some socks could be quite so labour intensive?

The stairs in the house, like the proverbial thorn in my side, are a constant source of annoyance and trouble. If Andrew is around, I can hitch a lift if necessary but left on my own I sit and ponder "Do I really need to go up there?"

My mum has taken over all household chores and her remit continues to expand - prescription collector, banker, dog walker, chauffeur, chef, laundrette and the new esteemed post of 'Portable Oxygen Cylinder Carrier'. When she goes off duty, Andrew comes on duty and his list of roles is equally endless, ranging from the sublime to the ridiculous. Yet, I'm not sure what my role is?

Eating has become a major source of stress. I don't feel hungry. Ever. I feel breathless and tired trying to eat a proper meal. My weight is on the decline and I cannot afford to lose any more, yet my peg tube decides that now would be a good time to start playing up again. I am taking my overnight feeds 7 nights a week, but am waking up half way through the night feeling sick and with heartburn, and have to switch the machine off. I then wake up with low blood sugars, because I had taken enough insulin to cover the whole feed. Who would ever think eating could be such a chore?

I have hardly been to work in the past few months and not at all for the past month. I suspect I may not be able to go back this time. I feel both relieved at the thought of not struggling into work, and at the same time horrified that I may be about to lose a crucial link; a link to independence, to sanity and to reality. Who would have thought the prospect of lazy days, long lies and no commitments could be so frightening?

It may seem from this post that I am feeling down, but that's not the case. I just feel a little overwhelmed at the moment, and perhaps, at times, a little afraid. A small health change is like a stone thrown into the water - the ripples spread out into almost all areas of life, and sometimes you are not quite sure where they will stop. However, I know they will stop. The waters surface will become still again. My life will fall into order; I just have to let it.