2020, has been one of the worst years ever. For most of us it's been awful and Covid-19 has just caused world wide mayhem globally. Well for me you can guarantee that 2020 is one of the worst years of my life. Trust me when I say I have had some terrible years.
It started off absolutely fine, Ben and I even managed to squeeze in a sneaky trip to Amsterdam to see Stormzy on tour, such a good trip until Ben ate those noodles and caused himself to have a blockage!!!
So soon after that Amsterdam trip, just before the pandemic really kicked off Ben ended up in hospital with a partial blockage. A simple enough routine of immediate saline and IV pain relief. I mean this stay was only a week long at the most, it wasn't too complicated and actually pretty easy to deal with compared to 2018. I ended up doing Uni work next to him in hospital just because I could.
Everything seemed fine again, we was just coping with the pandemic. I was having to get over the fact my degree just ended and had to be finished at home. At this point I think I just gave up on myself. During the Pandemic Ben had a few flares, nothing unusual and didn't require a hospital stay. However I had to move out because I couldn't concentrate on my work load and help Ben at the same time.
For the first time ever I had to put myself first in order to finish my degree, which was hard enough as it was. This was not an easy decision to make, it was horrible and I felt like I was just being a let down for Ben. I felt like I wasn't good enough for him. I still do.
Fast forward a few months I finished my degree!!!!! I persevered, I completed work whilst supporting Ben in hospital. I completed a degree somehow, even though I was focused on everyone else around me rather than my work. I can't help myself I got to support everyone, especially Ben.
End of August - Maybe- could be September. I don't even know anymore. Ben got hospitalised again. Same problem different month. Blockage and Crohns flare up- I actually told him to go. I hate myself for it.
This hospital stay was so so different. More scary for me. I hated every moment and I wasn't even in hospital.
Thank you Covid-19 because of you I could not be there to support Ben. I was not allowed to visit Ben inside the hospital at all. Which was a big lesson for me to learn, because I was so used to being there everyday. Suddenly I wasn't allowed there. I didn't know what to do with myself.
Ben, he was fine. He's in the best hands. Surely there was nothing to worry about. Nope not for me. I worry too much. To get round the whole no visiting thing we used our technology. Facetime, I've lost count of the many pointless calls I annoyed Ben with. I swear the only time he didn't hear from me was when I was at work. OOPS.
I was angry though. I was angry I couldn't see Ben, I was angry I said to him "You need to go to hospital". I was frustrated because I now couldn't see him or help him out. After about a week we got told he would have to have surgery. WHAT. AGAIN.
Tell you what, THANK GOODNESS I was with my Nan when I found this out. One of the few people that gets it. I was panicking. I was angry. I was a mess. I didn't understand. Why now? Why again? What the hell is going on? One of the biggest questions was why couldn't this be sorted back in March.
I mean don't get me wrong the doctors and surgeons were incredible. Bens rubbish with words sometimes. Dyslexic so understandable. He actually arranged to get the Doctors and Surgeons to speak to me directly to calm any nerves. How amazing is that? They took time out to speak to me!
In the mean time, Bens stuck in hospital on the TPN again. Complete bowel rest. To get around the no seeing each other we decided when I had a few days off work I'd go up the hospital and drop him a few bags and chill outside for a bit. I was there 3 hours. Saw Ben for 30 minutes because of the infusion timings.
Once again, Ben was to miss my birthday. How frustrating is that. I basically cancelled everything. That's the thing though. I was bitter about it. I was gutted. This wasn't the first birthday he has been unwell for.
My year had been so so bad so far that I was really hoping to have a decent birthday. Hoping a bit too much. Thats the problem when you live with someone with an illness. It sometimes feels like you have no right to be upset about these things. People constantly seem to "remind" you, 'oh well Ben's the one in pain and in hospital'. As if how I feel doesn't matter in the slightest. Im not whining. Im saying it as it is.
The day after my Birthday, 6 days after his surgery to resite stoma #2 and give him stoma #3. Ben actually got permission from his team for me to see him. This was because both of us were really struggling. I AM SO SO THANKFUL .
This was our first cuddle since his surgery and mannn it was needed!
Ben being in hospital this time round was awful. Not seeing him broke my heart. Thank goodness for technology. We FaceTimed every night before bed and called when ever we could. Communication was key this time round.
I had to be brave and communicate with Ben. We phoned and had calls just so he could explain what wires he had and why. There was no surprises this time. In fact, as much as I hate the fact I couldn't be there to hold his hand. And he knows I would have been.
I did kind of appreciate not having the pressure of going to the hospital everyday to see him. The communication with the surgeons and doctors and myself was incredible - especially on the surgery day. I swear I called them every half an hour to make sure he was okay. Then that evening after work I was able to speak to Ben again as he was awake. Surprisingly he was happy because he had an "outie" stoma again....
Times like this really do make you appreciate the small things in life like CUDDLES before bed !!!
Bens the one with the Physical yet hidden chronic illness after all. My problems aren't as bad, and because people can't see my mental health deteriorating Ben's illness where they can see he is in pain and in hospital is all that matters.
This is the harsh reality of living with 2 illnesses. I have never considered myself as ill before now. In fact "ill" isn't quiet the right word for me but I haven't found one that suits yet.
I am probably the lowest I have ever been, with no means of hiding it. I spent years powering through uni work and focusing so hard on that work, my part time job, Ben and everyone else that I never took time out for myself.
Living with an illness is not easy and no-one ever talks about how difficult it is for the one supporting their loved one.
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