Back off

I’d just like to take the time to thank everyone for their unwanted advice and opinions over the past 4 years.

It’s not enough that I am going through this without any real answers and have been through so many doctors, specialists, tests, operations and pain, but having you talk down to me and tell me what you think I should do or what is wrong with me, just does not help.
Take a step back and think about it for just a second.
Are you really being helpful to me or is it in some weird way just making you feel better by sticking your 2 cents in? Because I can assure you it sure as hell isn’t helping me.

I know my body pretty well. I’ve been living in it for almost 30 years now.
I know the pain of an egg being kicked out of my ovary, the crippling cramps of period pain, the complete agony of things moving through my bowel, the tight uncomfortableness of being bloated and the ache of muscle pain from exercise. 
But let me tell you, none of those things are the pain I experience when I’m so sore I am forced to take opioids, use the tens machine and a hot water bottle all at the same time!

If you want to help- just shut up. I do not want your advice. I don’t even want your sympathy. I just need you to understand it is fucking hard dealing with this and I don’t need you making me more stressed about it.
Stress makes it worse. It also fuels the depression.
Working too hard because I refuse to let it win, also makes it worse but I’m not a quitter.
It probably gets worse then because I’m working past the breaking point. The point where normal people would probably be laying in a hospital bed.

My pain threshold is not the same as yours. Do not try to understand my pain. Just accept it, as I have. Ask if I’m ok but leave it there. Don’t make me feel worse about it.
I am doing the best I can in a pretty horrible situation.
Just basque in awe at my awesomeness of continuing to have a life and leave me alone

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Defeated

Today I called in sick for work. 

I always feel like such a failure when I can’t make it in. Like I’m letting everyone down.

I just couldn’t do it. I felt so sick and dizzy from all the drugs. I’d barely slept because of the pain and tramadol appears to give me insomnia. 

It’s 10pm now and I still feel pretty weird although I haven’t taken any drugs since around lunch time. The TENS has been on all day and I’ve had my trusty hot water bottle attached to my side as I’ve dozed in and out of the day.

I felt that if I’d have gone into work today I would have done as little as I could and just been a hindrance 

I shouldn’t feel guilty about trying to give my body a rest, but I do. 

Working so bloody hard yesterday is what got me into this state today. I need to be kinder to myself and not feel bad for doing so.

Once I’m out of debt I’m going to treat myself to some serious pampering. I deserve it

Keeping you in the loop

Today has been horrific. So let’s start there and work backwards. 

By 8am I was already in tears!

It’s been a mixed bag the last few weeks and seriously hit and miss as to whether I’m suffering or not. 

The physio at pain clinic discovered I had practically no abdominal muscle control thanks to all the ops and the way I hold myself when I’m in pain. 

She held on to my hips, asked me to pull my belly button back towards my spine and when I informed her I was doing so, she gave me a look that said “fuck. We’ve got a long way to go” and told me I wasn’t safe to do pilates yet.

It’s been a week since that appointment and this time when we tried it again, her response was along the lines of “I can feel it this time” although I apparently can’t hold it for more than a second or two. 

She’s baffled I can do pole. But then again she hasn’t seen me actually attempt it!

I’ve been rota’d on theatre and portables as well as working with in patients, which means a lot of moving of heavy equipment and beds etc. It’s clearly too much for my body and I suck at taking things easy. 

I’m just a massive ball of misery and pain right now. It’s a barrel of laughs. 

I can’t even think straight enough to write this but thought I should try. 

I’ll bullet point the rest so it’s done

  • Receptionist at the GP attended my appointment without me even having to tell her my first name. How sad is that?!
  • Got whinged at by my fave B12 injecting nurse for not having had my smear. Remember the one they told me they wouldn’t do?! Make up your minds people!

Got asked to do an urgent portable chest at 8am. I turn up and the patient is sat eating breakfast and asks me to shut the door so she can go to the toilet and proceeds to get out of bed. I leave immediately and tell whatever staff that are trying to ignore me that it’s not happening and she can come to me (all the way across the corridor!). Get chased by a doctor who demands to know my name and tells me how ill this woman is and needs it now and tries to guilt me into caring with what if scenarios. I’m more sick than she is, so raging I walk away, bump into Matt who hugs me and I cry like a baby on his shoulder. It set the tone for the day perfectly. It was non stop. I was spread too thin. The drugs weren’t working and the TENS was cranked up to 21 whilst I hobbled around and held my side. Lots of funny looks from patients and staff. Don’t care. I’m still doing my job. 

I’m in bed now. It’s not even 6pm and I’m done

Sorry for the rant xx

This week’s update

So where did we leave off?

I was in pain. 

Same still happening. It’s been a funny old week. Lots of pain. Mornings seem harder but I think that’s because of the night time tramadol. 

I don’t know why I bother. It seems to give me insomnia and make me extremely nauseous in the mornings. 

I discovered that if I force myself to eat, no matter how close I am to bringing it back up, it ultimately makes me more human. 

I’m not sure how human I’ve been acting this week though because I feel like I’ve failed to function most days. Thankfully no tricky questions were thrown my way but having a heavily pregnant lady cry because she had been sent for an xray and the doctor hadn’t explained any risks of radiation to her. Plus her sister has cancer so she was massively panicky. 

Thanks for that one doctor!

What else? Bought new batteries for the TENS. They lasted 3 days. Can you get prescription batteries?

Oooh but a couple of positive things happened to stick in my jar (not a euphemism!) despite all the pain. 

An elderly lady’s daughter decided to give me a 10/10 for their imaging experience. Check me out still putting people at ease and being lovely when I want to throw myself under a bus to stop this pain. 

Oh and I’m one step closer to being that crazy lady who strips in public showers 😁

Decided to treat myself to some new bras even though I only went in for a bikini. Anyhoo the lady asked if I wanted her to step out whilst I tried them on but I declined and just wapped them out. (Great description right, wapped?!)

Sure does help when someone else does the backs up on the bras that have more than 3 clasps too!

She was lovely and informed me I have finally gone down from a G. Woo! I am once again a measly 36FF (in case anybody fancies buying me undies for my 30th 😉) 

I’ve gone down a cup and a back size. Yay. All with no trying too because screw that. I’m focused on this bloody mystery pain right now. Turns out my breathing is all wrong and my core sucks from years of intermittent pain and being all tense. So screw trying to up my cardio right now. 

Apparently I’m breathing from my chest and not my diaphragm. I’m crap at the pole warm ups and my right side is so much weaker with generally everything. I can’t even lift the xray detector with just my right hand any more.

The pain clinic physio recommended pilates but I don’t want to be that weird girl who looks normal but fucking sucks at everything. I know I shouldn’t care what people think but I do. I’m a mess on the inside. Physically and mentally 

I dunno. We’ll see and I’ll let you know

Ffs

I’m in pain again today. 

Codeine, TENS machine and hot water bottle pain. 

It’s bullshit. I wasted my weekend by cooking and baking instead of bloody skydiving. 

Roar

No drugs today!

After a really shitty few days I miraculously feel better. 

Tuesday night I got randomly sore again and vomited Weds morning at work. Since then I took a whole host of drugs to no avail. Bought that bargain tens machine and carried around my giraffe hot water bottle at work like a mental patient. 

Then this morning when I got up, it had gone. 

You must understand that when I say gone, I never mean truly gone. It’s rare that it goes completely. It’s there. Ticking away at at 2 or 3/10 but nothing worth being a whinge pot about. I can deal with this and it’s best friend nausea. Despite it being fecking annoying. 

This is all getting very boring now. And I’m sorry to those who have had to listen to me moan this week. Yesterday I was particularly needy. I even asked a mate to build me a fort so I could hide in it. They didn’t. I’m gonna go put a complaint in now actually…

Just another day in the life of Ny

One of my first thoughts every morning, after “piss off alarm, I’m not ready”, is “how do I feel today?”

I do a little mental checklist. 

Nausea- Still there or miraculously gone?

Today, like every day for the past 2 months, it was still there. 

Ok. So are we in pain?

So far so good but we’re lying down so that doesn’t count. Get up and see. 

Usually I make it to the bathroom door before any pain is noticeable and just like magic, it appears. 

It’s not crippling though. Just that fun, tight right sided pain. I can deal with this. I’ll just have to walk a bit slower and I won’t be able to lift as much on that side but it’s manageable. If money wasn’t an issue I wouldn’t go to work today but it is so I just plod on. 

Gave Buscopan another go and much like I anticipated due to past experience, it did nothing. I even doubled the dose I was supposed to initially have 😅  

The hospital pharmacy by luck sells TENS machines so I bought myself a bargain and have been rocking that so far today. It’s a welcome distraction but it’s an annoying little thing that beeps whenever you press buttons, or half an hour passes. 

It was less than a tenner though so I can’t complain. 

Also whilst waiting to pay I spotted something a tad unusual for a hospital pharmacy but what do I know, maybe I’ve just not been look. 

It was a vibrator. In a long box with clear bold ink saying ‘VIBRATOR’. I think it claims to be a mini massager but I’m not convinced. I even got someone to go double check I hadn’t imagined it because I didn’t have my glasses on 😂

So yeah that’s been my day so far and it’s only midday. Who knows what other kinds of torture I’m in for pain wise. I’m pretty gutted I left my hot water bottle giraffe at home 😔