It's been a really tough few days for me. I have found being in a bed increasingly frustrating, and as a result a lot more snappy with people. Running joke is I'm the old grumpy guy in the chair that lost his filter….but the shitty part is I'm not old am I? and I don't want to be stuck in a bed. I can't stay positive about it all the time, I am only human.
The first realisation I guess was a Saturday night, date night with Ross watching a movie and I just realised I will likely never wake up beside him in a bed again, to have that feeling of comfort and protection taken away really upsets me. After a chat and I eventually stopped crying he disappeared to the bedroom for the duvet and pillow and said "I may not be in the same bed but you can certainly wake up beside your husband when ever you wish" Ross had been working his butt off for days doing an amazing job and we were just casually discussing how he needs to look after himself, go have a shower and we will have an early night, all he said was "a shower seems like such a chore" and I felt an overwhelming feeling of jealously. To feel water around my body again, to be in a bath or just to feel completely clean. I am…clean that is, I get cleaned daily but a bed bath is no comparison to the real thing. It's then really hard to get yourself mentally out of the trail of thought, what your frustrated with when you physically can't move, you can't physically distract yourself either. I started to sleep more and more each day, again without physically moving its hard to wake your body up, but you then worry is it lack of stimulus or is it the cancer. I have however thankfully lost all my focus on time, the longer I'm at home and got more things done I feel less pressure, I have still so much to do, but if it doesn't get done I can rest easy. A lot of this is to do with the community outreach and the support you have shown me and my family. It has exceeded anything we had thought possibly could happen and has made a huge impact on us over the past few weeks and will do going forward with the boys. "Do you know where……nope…nope I don't, I don't have a clue where anything is! Not going to lie it's 50/50 whether I want to laugh or cry with this one. It has been 3 weeks now and I have no idea what's going on in my house! Nobody tells me where things are but the ask me! I get this, I totally do and sometimes it is funny as normally I would organise the shopping etc so I would know if there was something in the freezer or where the black bin liners are but now I really don't have a bloody clue and sometimes it really gets to me. Everyone is getting used to raking now though, but then there is a tendency for people to think things should go elsewhere and when Ross go's to look for it it has been moved and he gets really frustrated, I try not to find this funny but I feel like it's karma for all the years of asking where things are! Even with all the moody crap they get from me they still show up and support….they have been amazing, I'm just learning to take a step back as well myself, it's been a steep learning for us all. Can I just say I have a new found respect for anyone with restricted mobility even babies….It is so bloody boring seeing the same walls day in day out and not being able to move. Family and carers coming in are great, break up your day but your head and body can be in the same position for hours, felt like I was getting a pain on my scalp just from not moving…It is so frustrating not being able to move or not having the energy physically and/or the motivation to move what you can, for me, my arms. Cups of tea going cold because the idea of lifting a mug seems too much trouble or effort, I would lie there thinking about the tea but not doing the simple act of reaching over to drink it. I can't sit up to support my body so it's using the bed and then lifting my neck….always knew cardio wasn't my thing but that’s bad even for me. I wake up in the morning and in my head I am in a nice comfy ball, cuddled into my duvet, but when I wake up more I realise, no, you are in the exact same position you were placed in last night because you can't fecking move ya twit! Like in my sleep I will get my movement back or something! My Cinderella story, you can move till midnight! So I started off my day moving the bottom of my bed, well Ross did, about a foot to the right, and even just this little change, my head is at a different angle, I'm looking to the left more to look outside so my neck is moving more. We moved the table to the left and although my weaker side I've been using that arm more. I done more exercises and for the first time in awhile I can lift my hand to the top of my head, Ross looked like a baboon yesterday scratching my scalp! I have my brother over from Ireland and I felt so much more present and engaged with them and the kids so it has been really a positive day for me mentally, the medication change may help this too so I'm going to continue to make what changes, even though small so I can to help too. Or at least try. Night night my lovely people Ross gets the boys up for a pee and tucks me in at 11pm so I finished just on time!
3 Comments
Fiona Milner
24/3/2021 09:10:00 am
Your still mum and mums know EVERYTHING !!
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Lloyd
24/3/2021 09:07:46 pm
Thank you for this. You don’t know me, but I am childhood friends with Gemma’s husband Gary. I am currently recovering from cancer surgery and it has been one of the hardest things I’ve ever faced. Hearing your bravery, and that someone is feeling the same as me, has been so comforting.
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Callum O'Donnell
30/3/2021 04:59:09 am
Hi Creina,
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