How ironic is it that I do a post about motivation or the theory of it only to lose my own for a little while. The struggle is real and it’s always there hence why you have to keep fighting every day.
I have so many frustrations and things I can’t control and this overwhelming feeling of being stuck in a game where I’ve repeated the same level everyday for what feels like forever and it’s got to the point that for a couple of weeks I got so sick of playing and everything dipped especially my mood. I felt like I was in limbo with everything and in somethings even went backwards. I know this is not really the case to be honest but it was hard to shake for a little while.
My birthday last year I remember lying in bed in the hospital and I started planning for a future… a future I could never see before. I was up to about 30 steps in my walking and once I came home walked to my sitting room for the first time in over a year. I was so happy but since then things seem to have slowed & in some ways stopped, which granted that is to be expected and though I realised that my knees were never gonna do any races etc. I did think given how far I’d come that I’d manage to walk to a car outside etc and then maybe use a wheelchair for anything long distance.
As you may or may not know I have osteoarthritis & usually at around my age they see a little bit of damage but my knees are shot (words of my consultant) I was able to stand and step through the pain enough to transfer. Then last year at around this time my right knee locked and the pain was horrible even just moving it across the bed. I had an mri about 6 weeks later and the little bit cartilage I had was torn and jamming between my knee joint causing the pain and restricting me straightening or lifting my leg from the knee.. it took 6 months for it to wear enough to stop catching in my knee joint.
Eventually after physio I started standing again and over a few weeks managed to get up to 15 seconds and then in September 2018 the same thing happened to my other knee so I’m back to being stuck in bed. I was able to sit round and do my physio but 5 weeks ago ended up with bed sores which meant dragging myself across the bed wasn’t an option in case I made it worse, though touch wood they are just about healed now.
The knee specialist wants to replace both my knees ideally if I was on my feet it would help. He said that I’d need to lose more weight I already knew that to be honest though he said it was more for the anaesthetic as the knee replacements would hold my weight. I was meant to go to the hospital 2 weeks ago for a review with him but the Ambulance didn’t arrive. I was more gutted not to have gotten out the house to be honest I just cried most of the day. It’s another complex story which is massively frustrating.
I have complained to pals which I have debated about doing because on one hand I am so so grateful for all the help I have gotten on the other the repeated issues with the ambulance service and weight tracking frustrate the life out of me and make me feel different despite how far I’ve come. I wasn’t going to complain because there are so many who will judge and to be honest I have even done it to myself but I realise if I don’t say something nothing will ever improve. So fingers crossed someone listens. I have left the house about 8 times in total this year all for appointments most were rescheduled or I was late for. There used to be bariatric ambulances but they were decommissioned two years ago and the patient ambulance has a weight limit of 25 stone. So it’s an A and E ambulance they send for me. I have no other way out the house. however this worries me massively in that if they do get to me in time to get me to an appointment. when I’m on it if a call comes in as an emergency I could be delaying someones chances and that to me is horrifying to think.
I am adding to this post as I started writing it early December and it’s now the 30th.
My knee is still struggling and so I also made the decision to get hoist put in, it wasn’t what I wanted to do and think it added to my mood drop but I need to escape these 4 walls as it’s driving me insane. The hoist was meant to be fitted on the 22nd but I need to be out of the room when it happens for health and safety reasons so I currently don’t know what will happen with that.
I have also missed another two appointments. Pals hasn’t gotten back to me either. so I am now going to put a complaint in writing to the hospital commissioners as to why the Patient Ambulance doesn’t cover all patients and also why despite having a bariatic department is there no way for me to get weighed as the last time I was weighed was February even though I have offered to pay it seems impossible and when you are losing weight it is extremely frustrating not to be weighed and I’m not asking weekly even 3 monthly would be something. I had been pinning my hopes on getting weighed in October was even told it would happen and it fell through.
I hoped to have a 2 year weight update from my highest recorded but again it didn’t happen. I tried to pep myself up put make up on etc but my mood dropped and I stopped calorie counting & planning ahead and this affected my food in take, so I was having calories more around my maintenance level of 2480 and on a occasions going over those. This went on for a few weeks I then brought them down to 2200 knowing Christmas was coming and knowing I wouldn’t be counting calories as such for those few days…. so as I said it’s now the 30th December I am back to maintaining… I’m gonna enjoy New Years Eve and from New Years day start again it was just a blip in my journey and one that is far from being over.
I will be back again in the New Year with any updates and also any plans for the future year. Whatever you do & however you celebrate stay safe and Happy New Year xx