I have no recollection of getting back to the rental. I’d say my first memory would be laying in bed with ice packs on the back of my head watching friends. A very productive recovery in my eyes, there is something so comforting about friends you almost feel a part of it when watching or perhaps binge watching 10 years worth in two weeks does that to you !!
I recall utter distress trying to get myself out of bed, my head felt so unbelievably heavy to lift I had to hold the back and brace myself counting 1..2…3…whilst pushing myself forward. No one can prepare you for this weighty feeling and the fear your head is going to be that heavy forever plagued me quite often. It was such an unnatural and uncomfortable feeling.
I was unable to do much but rest in bed with many an ice pack, hot water bottle and Netflix. I had my own en suite, a lovely comode in the corner of my bedroom so getting to the toilet was easier . Not long after being back at the rental we had to return to the hospital as I was having trouble swallowing (still am) and we also noticed spots on the back of my throat. I am unable to remember the Journey back but remember sitting in my wheelchair in the waiting room fighting away the tears as it was so painful to just keep my head upright and that was in the brace. I felt truly dreadful. My mum came in with me and we saw two of Dr Sandhu’s nurses who checked me over and said I had a throat infection and prescribed some anti-biotics, I burst into tears in the room I just felt so unwell and in so much pain. I wasn’t taking the pain killers I was meant to take as my gastro issues were so bad I knew the tablets would make it even worse so I was only taking muscle relaxers and paracetamol. Both nurses said there was no wonder I was mentally and physically drained on no pain relief the first week of leaving hospital but I was adamant I could get through, not out of heroism, simply to try and avoid any further gastro flare ups which can be equally as debilitating as fusion pain. Everything with my health is a fine balancing act.
A few days after being home I attempted a lap of the landing, this picture taken below shows me walking with the frame, I have absolutely no memory of doing this walk. I’ve heard it was a big improvement from how I walked in hospital.
This picture was taken a few days later walking without the frame of which I do remember. I recollect my head feeling so heavy, like it didn’t know where it was meant to be in space knocking my balance off but it was a big achievement to walk unaided.
I remember these little walks taking so much out of me that I had to get back into bed. Bathing was equally as exhausting despite the fact my mum had to help me bathe. I couldn’t have asked for better carers my Mum, Nick and Dad all looked after me so well. My mum was never out of her apron with the kangaroo pouch as she nick-named it every-time she came upstairs there would be a snack, an ice pack or something stored in it for me.
After a while I started to venture downstairs navigating the stairs with the help of my Dad. We set up camp on a chair in the doorway so I could feel the sun on my face and fresh air. I only managed short stints but it was lovely, each day we increased the time I was able to tolerate holding my head upright for. I made it into a mini challenge everyday. We then began doing walks with either my Dad or Nick across the street with the walker and then with my cane and holding onto them until eventually I walked to the local park (5 mins away) and was able to sit on the bench in the sun, granted only for 10 minutes as the pain was too great, I felt very unsteady and shaken but it was still an achievement none the less. This picture of the sun peeping through the trees was taken the first time I made it to the park.
Frustration with myself soon reared its head of how slow I was at doing menial things. I knocked many a cup of tea off my side table as I couldn’t turn my head to pick it up. I couldn’t open my mouth enough to fit a tooth brush In to begin with due to muscle tightness and spasm. I wasn’t allowed to bend down to pick things up and all my movements were slow and unnatural not to mention painful. I desperately sought the fluidity of my movement again. It became apparent that when coming to the end of a drink I could not tip my head back to get the last part of the drink so in came the straws. This was all going to take some getting used too and I hadn’t even got into first gear experiencing my new neck mobility and range of motion (still haven’t).
Two weeks had passed, it was time for my follow up with Dr Sandhu back at the hospital. Dr Sandhu took my steristrips off and was happy with how the wound was looking both on the neck and where the rib was removed.
We discussed some issues I was having with my vision and swallow and then went over some general aftercare for the next 3 months of which time I’ll require a scan to see how the bone is fusing. Dr Sandhu pulled up some images of the hardware and was extremely happy with the positioning. He answered my many questions regarding healing, muscles, pain, movement, feeling the bolts in the back of my head and much more, Im sure he thought he was on question time!!! He asked for us to arrange another appointment with him before we head back to the U.K. but so far he was very happy with the progress I was making and how well I was managing the pain.
A day or so after my follow up I started to develop severe POTS symptoms, my
Blood pressure plummeted and heart rate high. My gastro system flared to an unmanageable degree and i was in a great amount of pain eating the smallest of meals. I wasn’t coping well at all, it was far too much hitting me at once. Over the course of days it became increasingly difficult to stand without feeling like I was going to pass out, my heart would pound and my legs were like jelly. I increased fluids and salt intake which made little difference. We began talking about the possibility of coming home a week early and getting back to the U.K. as medical bills could have escalated if I was to be admitted which we felt was pretty imminent. Our friend liased with our airline and managed to get the flights changed for myself and Nick but sadly not my parents. We had 1 hour to pack our bags before we had to leave for the airport. This was extremely emotional knowing I was leaving my parents behind as we had started this journey together and I wanted to finish that way. I hadn’t been upright for any more than an hour since fusion surgery, this was not to be an easy journey ……
*For those reading my blog awaiting fusion surgery I will soon add a piece of what I found helpful before surgery and during my recovery updating as time goes on in my recovery *