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Archive for April, 2012

Missing in Action

It’s been a few weeks since I last posted. Firstly, I was exhausted from the Dublin trip but I never seemed to find my ‘get-up-and-go’ again, it sort of got up and went. Since then I seem to have had a number of bugs and things making me feel grotty, one after the other; although, for a while now, I’ve been feeling really low and lacking in something (motivation?). As a result, I haven’t been able to put my mind to much, and the blog and other projects just slipped away.

Strangely enough, I’ve actually been quite good physically, with the joint swelling and stiffness staying down, much less pain and barely any rash or temperatures. I’m still on crutches, but this is mainly to do with weakness, balance and a tiny bit of instability in my left hip (my physio raised the nerve damage question again recently regards to a difficulty I was experiencing placing my foot, but I’m hoping it’s just lack of practice). I’ve been keeping up with the exercises at home, as well as hydrotherapy, which has helped me come on leaps and bounds (well almost!), so I’m hoping I can get rid of the crutches soon.

All these things have remained pretty stable, even when reducing the Prednisolone, so I feel like I should be celebrating rather than getting down in the dumps. I think reducing the Prednisolone is at least partly to blame  for these mood changes though – each time I do lower the dosage, I feel such hopelessness and despair, as well as a physical tightness in my chest that I imagine stems from anxiety and panic. Then, as my body adjusts to the new dose, these things ease off until I feel more like myself again… just as it’s time to reduce and go through the whole process again.

I don’t have much further to go now before I can stick to a maintained level, so I’m determined to persevere and come through it with my optimism and motivation in tact (and my sanity!).  I’ve been  up and down on steroids most of my life, but this has been a particularly rough ride.

Thanks for bearing with me,

L

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Home From Dublin

I had a busy week last week, with one appointment and another, and then getting everything ready for our trip to Dublin, so I didn’t get chance to post beforehand.  We left for the airport at 5.00am on Friday morning and I was feeling as excited as everyone else, looking forward to exploring somewhere new and a taste of normality too. I was determined not to let the past couple of months get in the way of enjoying myself and for the most part, it didn’t; but there were a few tough moments, I’m not going to lie.

The first mistake I made was to do far too much walking on my crutches, most of it at the airport before we had even arrived in Dublin. By the time we had dropped our luggage off at the hotel, I was already exhausted and we still had the full day ahead. After a brief rest we hired a taxi to take us to the Hop-on-Hop-off bus that we had already booked, planning to take the full tour in order to get our bearings; I somehow managed to get myself to the top deck so that we could get a better view of the city as we went along (that’s the whole point of these things really isn’t it?!) but at least it was a couple of hours sitting down and it was well worth it.

I’d never been to Dublin before and so it was great to finally see all the places that I’d heard or read so much about; I was excited by all the things I wanted to do and places I wanted to see. After the bus tour, we went to O’Connell Street for some lunch and talked about what we wanted to do the next day – with it being Good Friday , most tourist places were closed then and those that were open had massive queues and so, with me already flagging, we decided the best thing to do was to go back to the hotel for a rest before the evening meal. I felt a bit guilty because it was my boyfriend’s birthday, but he seemed happy enough – we had all been up since 4am I guess.

There is no alcohol served in Dublin on Good Friday. Fortunately, we discovered this before we went and found the only place that escaped the regulation – a barge restaurant on the canal – which is where we headed to in the evening. I had my first little ‘blip’ on discovering the dress I’d packed barely (and only painfully) fit, despite having only tried it on two days earlier. Yep, thanks to the dreaded Prednisolone I’m guessing; I seem to be bloating up more now than ever and it’s making me increasingly self-conscious. I’ve been here many times before and know that the fluid retention soon goes down etc, but it never gets any easier at the actual time. Maybe what I see in the mirror is ten times worse than what others see, but it upsets me regardless and this evening I’d just wanted to look nice for my boyfriend on his birthday. I managed to pull myself together though and we all had a lovely evening.

I woke in the early hours of the morning with excruciating pain in my legs and hips; the worst I’d had since being in hospital. I cursed myself, thinking that I’d managed to wreck all the hard work I’d put into recovering in just one day. I tried to stand up with my crutches but even the walk to the toilet was a massive struggle; it didn’t look like I’d be going far that day. When it came to it though, I did manage to at least get out, once my painkillers had kicked in. We hired a taxi to the Temple Bar area for breakfast, then it was back on the bus for another tour (downstairs this time). We had hoped to stop off at one of the attractions, but because everywhere had been closed the day before the queues were all far to big for me and I doubted I would get round anywhere anyway. I regretted being stubborn and not taking a wheelchair, but pride at being with a big group of people got in the way.

We returned to Temple Bar and found a nice pub to sit in, where I had my first taste of Guinness and Blackcurrant. It was time for my second ‘blip’; the sheer frustration of being in such a fantastic place and not being able to experience it like I wanted to got me right down. Instead of a taste of normality, it felt like I was being slapped in the face with everything I couldn’t do. It seems a bit melodramatic now, but at the time it tore me up. And it did so again, later in the evening, when we went to a crowded bar to watch a live Irish band. This was something I’d looked forward to for ages, yet suddenly I felt so out of place and panicked by my vulnerability that I could have cried; but I held it together, my friends found me somewhere to sit, and I managed to lighten up a bit and enjoy myself again.

I woke up on the third day with less pain, probably because I had been much more sensible the previous day and had taken it easy. The plan was to do the same today and head for just one attraction – the Guinness Storehouse Museum. So, after another good breakfast and a little bit of souvenir shopping, we headed over and escaped the queues since we booked online. There was a bit of walking but it was something we all wanted to do and my legs just about held up. The staff were even kind enough to find me a seat once we got to the ‘Gravity Bar’, where you get a free pint of Guinness and a 360* view of the city. From there, it was back to the airport, the trip over already and me planning what I wanted to do when I returned once I was fit and well!

My airport experience in Dublin was much better – I was given a wheelchair as soon as we arrived and the staff were really helpful when it came to boarding the plane. On landing, I even had my own private lift off the plane; they couldn’t have done more for me really. So, for once I will writing a thank you letter and have nothing but compliments for Ryan Air, a budget airline that have a bit of a reputation for being awkward. If only I’d done that from Manchester, I might not have worn myself out so easily, but then I will go and be stubborn even when I know stubborn pride wins you no prizes.

So, it was a good trip all-in-all and, apart from those occasional blips, I did really enjoy myself and I can’t wait to go back to Dublin in the near future, when I can make the most of it. I’m absolutely shattered now though, so I think it will take me at least a few days to recover!

I hope everyone is well and had a lovely Easter weekend,

L

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