Chronic Illness and Mental Health

In the last 12 (almost 13) weeks, Tom has spent 2 at home.

We are now 4 weeks and 5 days into his most recent stay, which started in Fathers Day.

We’ve had the usual, stomach pain, sickness, nausea etc. We’ve also had the pulse rates reaching 190 and what can only be described as a psychotic episode.

This time last week, I came home from work, having barely spoken to Tom all week because I’d been unable to go up and see him and he was too ill to talk on the phone.

His disability had been approved and he didn’t know yet. He called me, he didn’t sound great, but we were talking. I explained all the elements of PIP and which ones he had been awarded, he was pleased.

Then he started complaining that he felt weird. He wouldn’t elaborate. I told him to call a nurse, to which he replied he couldn’t he was outside.

Toms room is at least a 5 minute walk from outside. He was in no condition to walk that far and now he’s moaning he feels weird. I grab the house phone and start dialling the number for the hospital switchboard, when a lady starts talking over his phone. Tom was in his room. He had never left his room. I could hear him in the background shouting to tell me he loved me. The lady, who I later found out was a healthcare assistant, told me to come to the hospital.

10 minutes later, the deputy ward sister calls to make sure I’m coming and to tell me a psychologist was on her way up to see him.

When I arrived at the ward Tom was in the corridor seating area. He was confused, he said he’d forgotten who I was when I was on the phone to me. But he remembered now.

He’s remembered since. It’s been a week and nothing similar has happened, but these things don’t happen for no reason.

Mental Health isn’t a common subject talked about in relation to chronic illness but it should be. Every person I’ve spoken to about Tom being depressed has agreed that he has every right to be. So why is this something that more people are talking about?

Why is this still a type of taboo subject in the chronic illness community?

Tom has been put on anti-depressants and, following advice from the doctor,  is referring himself to see a psychiatrist. But it shouldn’t have ever got this far.

 

 

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Celebrating the saddest things

Whilst many people would celebrate a new job or a birthday, I found myself celebrating disability today.

Stood in my kitchen alone, with a 250ml bottle of prosecco, celebrating Tom being passed his PIP payment.

In the eyes of the government Tom is now classed as disabled.

And I was celebrating.

Struggling through chronic illness makes you appreciate all the little things in life. It also makes you so incredibly greatful of all the help surrounding us.

Reality of Gastroparesis

I’m writing this during a bad day for Tom. He’s in bed. He has been since 3pm. Sick bowl by the side of the bed. TPN running into his veins.

Unfortunately this is the reality of Gastroparesis.

It’s not being able to enjoy a day in the sun with your 2 year old and making sure you’re home by 3pm for when the nurse comes.

It’s insulin injections during the night and waking up at 5am to disconnect your feed.

Its getting sly comments through family members because people are too afraid to say it to say it to your face.

It’s not knowing whether your fiance will still be with you in the morning, or whether he’ll have been taken to A&E during the night.

It’s having your 2 year old learn to say hospital and blood sugars before he knows his colours.

It’s knowing Doctor Surgery receptionists by their first names and buying them all Christmas presents.

It’s having more nurses visit you than friends and knowing more medication than I have space in my brain for.

But it’s also getting to watch your little boys face light up when Daddy comes home and feeling like I’ve won the lottery when I actually get to go out for lunch as a family.

It’s appreciating all the tiny little things and knowing who your real friends are.

It’s having your relationship pushed to the absolute limits but not even slightly cracking it.

Why I started a blog!

Another Day, another “you should start a blog” type comment.

Originally from close friends, then from my mum. But today, it came from a nurse. I don’t know why but this one pushed me to do it.

I’m engaged to Tom. A 6ft10″, 27 year old with a chronic condition. Usually when someone says chronic condition you think of illnesses such as Cystic Fibrosis or Asthma.

You don’t think of Gastroparesis.

Gastro – paresis. Literally meaning Stomach – Paralysis.

Tom has gastroparesis. Our lives are filled with sick buckets, doctors appointments and tubes. Lots and lots of tubes. Our living room looks like the store room in a hospital and our little boy, Archie (2), has an obsession with nurses.

Tom also has a strange habit of turning the simplest tasks into incredibly funny stories. So I’m gunna share some of the funny, and not so funny, stories with you.