I'm getting more mobile!

I've been home now for just over two weeks and we have been slowly adjusting to everything in the meantime. Every day, the carers come in to get me up, into my back brace and washed/dressed first thing. Then I either chill out on my chair or sort things; have also had lots more visits from professionals to ensure everything is as it should be.  The carers come back at lunchtime to get me standing and I go for a little walk - every day, not a great distance but further than the previous day and for a little bit longer. It's getting easier to stand and walk with support. And then in the evening they get me back to bed and remove my brace.

We've also had some lovely visits from friends and family which is always good, especially when I am sitting up in normal clothes rather than trapped in a hospital bed! And I've managed to do some work which has been brill - both for my employment and for the PTA, which gives me confidence that my brain hasn't melted with everything going on. I hope that next week I can build on this some more.

I have had two really good things happen this week though with regards to my mobility. Firstly, my wheelchair has arrived which means I can get around the house and out into the garden. Technically, it's an indoor chair but can be used briefly on flat pavement so using it on the garden path is fine. I'm also getting better at driving it. Bring on BBQ weather!  And secondly, I learnt today how to get in and out of the car thanks to the OT. This means we can go out this weekend, perhaps for a Mother's Day meal? Or at least down to the beach. Hurrah! She also recommended ditching the zimmer frame and returning to the wheely trolley walker I got last year.

My ride awaits!

So all in all, (literally) small but positive steps forward.

Home Adjustments

Goodness, it's been a whirlwind since I got home on Thursday.  On Friday, we had loads of bits and pieces delivered, including the specialist riser chair which has been a godsend! The carers have been coming as planned and everything with them has been going smoothly, so again, that's fantastic.

Saturday and Sunday were spent sorting things out - or, more specifically, my husband doing so and me making lists.  I also got a hair wash; thanks for the inflatable basin (you know who you are) which worked a treat - clean hair makes a huge difference to how I feel!  I have been overwhelmed by the love and support all my friends and family have given me and, quite frankly, I don't think we'd have managed without it.

Today, I had a visit from the wheelchair service which feels a bit mad. However, it will give me an element of independence that I don't have at the moment - plus will enable me to get out and about to an extent - so it's necessary.  I wasn't very good at driving it though...  Guess it will take some practice!

We are trying to rest as much as we can as well, but with all the things that have been delivered and need sorting, it's difficult.  However, I very much hope things will start calming down now that most things are here, care and medical arrangements are in place and appointments are booked.  I now need to focus on regaining my muscle strength and getting more mobile.

Homeward bound?

Today we had a very productive day with lots of things getting organised and/or finalised including equipment, care arrangements, safety issues, transport - so many pieces of a puzzle that needed being put together to get me home. And I do believe that today, the puzzle is almost complete!

Everyone has been totally amazing to get us to this point. And as much as the hospice is wonderful, I do want to be home with my husband, girls and cat. Please keep everything crossed that our scheduled date of Thursday goes ahead as planned!

Saturday trip home

I had another fantastic visit home today; I was really lucky as apparently the volunteer drivers don't tend to work weekends so it was so lovely that someone said she could take me home and bring me back to the hospice.

Not only is it wonderful to be home with the family, enjoying my home comforts and cuddles, but it was another good opportunity to check what's needed to get me home for good and still be slightly mobile and safe.  At the moment, I'm going home in a wheelchair and having to stay in that for the duration of the visit as I'm not strong enough to stand up and down myself.  However, once we get a specialist riser chair, this will make getting up and down so much easier so I will be more able to shuffle myself around (with help and supervision at first).  This is in the pipeline.

Rise and recline chair

The plan is to get me home before next weekend so fingers crossed we can do this!

Where am I now?

So here I am in the brilliant hospice.  The care and attention to getting me better has been incredible. I've also had some fab visits from dear friends, so many well-wishes and messages and gorgeous gifts.  I feel so lucky to have such wonderful people around me, wherever they are in the world.

Beautiful!

When I arrived, I wasn't in a very good way.  Yes, I had managed to stand a little with the hospital physio's help, but I wasn't strong enough or confident enough to do much more.  I can now stand with help and walk/shuffle with the help of the zimmer frame.  I am being looked after holistically - medically, physically and emotionally.  They are also concerned about the whole family - it's not all about me!

I'm just going to take a minute to write about hospice care, as it isn't always what people think it is. The aim is to improve the lives of people who have a terminal illness, however long that may be, and people - such as myself - may need to go in and out for short or longer periods over time.  I've taken advantage of pain control, physiotherapy, occupational therapy, complementary therapies, palliative care and rehabilitation as well as the amazing care received overall from the staff and volunteers who work here.  There's also financial and practical advice and support for the whole family such as respite and counselling.  They try to be almost a home from home - for example, I've decorated the room with photos and drawings the girls have done and I get brought a Baileys once in a while which is most pleasant!  I have a family room with a sofa bed, so we've also had a couple of family sleepovers which were fantastic. Hospice care is free and this one is a charity (I assume they all are?), with most of its funding coming from donations, so everything helps.

Back to the present.... Yesterday the hospice arranged for me to go home for the day. This was the best ever! They've found a wheelchair I can use and so I was transported in their special van back home. Our cat was so pleased to see me! I had a nice long cuddle with her; we've missed each other!

Isn't she gorgeous?

The OT came over to discuss what's needed to get me home and we developed a plan of action, so I am more confident that things will start happening to get me there soon. My husband cooked a lovely lunch and we watched the new Thor movie, which I've been dying to see for ages! My mum collected the girls from school and came over so I also got to see them all which was brilliant. And then I had to say goodbye which is always difficult. But it has meant I am even more eager to get home as it was so lovely to be there with everyone. Patience and time, but I will get there... we're aiming to get me home later next week!

Transferring closer to home

Once the back brace had been fitted, I was returned to the local hospital pretty swiftly.  In fact, I think it may have been the same day.  We were very happy with this as it meant less travel for the family as well as being a more familiar setting.  However, by the time I got there, the night shift was just coming on and they didn't quite know what to do with me or where to put me!  So getting settled was a bit of a nightmare: getting the right bed (I need an electric one), the right medicines, being put in the right place - but by the next day, everything was sorted and I was in my own room with my up-to-date, correct drug chart and a perfect bed.

The hospital staff were all brilliant.  They are so kind and caring and, despite being so busy, did as much as they possibly could for me.  They all learnt how to deal with the brace.  At night, I had (and have) to be laid completely flat and log rolled out of it by four people.  I then must sleep straight and flat on my back.  In the morning, I got (and get) log rolled back into the brace and that meant I could start to sit up.  It was really weird at first, having been flat on my back for over two weeks; the dizziness was the hardest to overcome initially.

Once I had got used to sitting up, it was time to start to think about mobilising.  Apparently, one's muscles start to forget to work after just eight hours - which is why legs may feel wobbly in the morning!  I had no idea.  So after a few weeks, my legs were completely gone and I needed the hospital's physiotherapists to help me walk again.  I don't remember how long this process took, from being stuck in bed to being able to sit out in chair.  Apparently it was a few weeks, but to me, it's a bit of a blur.  But with the patience, skill and kindness of the physios, I was finally able to get out of bed and shuffle to a chair!

Sitting out in the chair

From here, it was a matter of starting to properly walk again which took practice each day - but each day, I was walking further and further with the help of my lovely trolley walker.  My first big outing was to the hospital's reception, where we could sit, chat and people watch.  This was lovely after having been stuck in the one room for however long!  And the other thing I needed to practice was stairs - again, which took some time, but I did it.

My trolley walker.  I still haven't pimped my ride.

Once this was under control, we were finally able to start to think about getting me home.  I had a day trip home with the hospital's Occupational Therapist to check what we had, what was needed and how best furniture and equipment could be arranged to ensure I was mobile but safe.  The only hiccup was getting a care agency to come in at an appropriate time with the right number of people to log roll me; this delayed the discharge process for over a week, which was very frustrating but luckily I was allowed day trips home in the meantime.  However, a great agency was found and finally, I left hospital at the beginning of April 2013.  I had been in hospital for seven weeks.

Again, the support I received from friends and family was my lifeline. The visits I received made my days, as well as all the kind messages and contacts via the internet and phone. It all meant - and means - so much to me.