Send drugs

This meme tickled me. So very true. 

I’ve been relegated to co-codamol whilst I wait for the bank holiday to end and the pharmacy to open. Desperate times call for desperate measures.

I make no secret of codeine being my drug of choice. It doesn’t make me sick like the tramadol but I don’t have any of that either. 

To put this in perspective each co-codamol tablet has 8mg of codeine in. Where as I usually take 60mg of the stuff at a time. 

Useless!

But I would rather suffer than take the morphine and get hooked. Coming down off that was incredibly difficult last time.

This heat wave can piss off too. Hot flushes and summer are not a great mix. I’m so uncomfortable in my own skin. Much like the rhino from the “Just So” stories. 

If I could take out all of organs below my diaphragm and carry them round then I would. 

I’m not having a good day as you may be able to tell.

I tried to make my bedroom a bit more livable, i.e, making a path from the bed to the door but it wore me out. I’ve feel really sick and dizzy the past two days and it’s making me sad. I want my life back. I have big plans this month and I’m scared I won’t be able to do them. 

Strategically I have booked the day of the shows off because as you may remember from yesterday’s charts, I just don’t have the spoons to do both.

I wish there was a light at the end of this tunnel but I’ve coke to accept that perhaps this is life now 

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Spoons

I don’t know how many, if any, are familiar with the spoon theory but this picture sums up my day..

I’m exhausted and I’m sore (there’s currently a drug drought in my house and the pharmacy isn’t open until tomorrow. Co-codamol just isn’t cutting it).

I deliberately didn’t attempt to leave my bed til after 12pm and took my time getting ready in order to maximise my time outside the house.

I lasted 5 hours. Which may not sound like much to most but that’s more than I’ve managed in a long time. I’m so tired and sore now but thankfully I don’t have to do much tomorrow.

For those that are interested in the spoon theory, this picture sums it up nicely. Although it’s about a different chronic illness, the theory is the same.

Obviously the snippet of the day where I looked good and felt ok made it to Facebook. If only you could see me now!
I was not going to miss out on one of my best friends 30th/passing university party, in the same way I would not miss an opportunity to see my granddad despite the 3 hr car journey!

Some things are worth being uncomfortable for 😀

Thank you

Thank you all so much for your kind words yesterday. You’ll never know how much they meant to me. 

I cried at the thought of my little blog having any kind of impact on anyone’s life, let alone multiple people. 

I’m so happy that people have appreciated my honesty and detailing my struggles and that even in some instances, given others the strength to continue with their battles. 

I’m always here for a fellow sick kid xx

Charts and scales

Sorry I have been somewhat absent lately. I just didn’t know what to write.

I’ve been disheartened by some comments about the blog and my pain levels. I started to feel like nobody was interested in knowing what was happening and that maybe actually I was imagining things. But then I found this pain scale chart and remembered that actually, I am doing really fucking well!

chronic pain scale

I think this pain scale is pretty accurate for me.
The people I see daily know when I’m not well and mention when I’m quieter than usual.
They also know when I’m having a good day too and are quick to let me know I’m looking brighter or have my ‘sparkle’ back!

I don’t know why I bother listening to other people.

Those that matter know me.
They know I work damn hard through the pain and wouldn’t just put it on. I’m well practised at hiding it though so perhaps they just fall for that.

I guess I’m just tired.
Tired from lack of sleep.
Tired of pretending I’m ok.
Tried of trying to find a reason for the pain.
Tired of trying to find relief from it.
Tired of my own damn voice talking about it.

Im grateful that people still care though.

I downloaded a pill tracker app a little while ago because I’m useless at remembering when I last took what, because Im taking them like sweets. It’s really interesting to document just how much I take on a bad day.

(I have to take the HRT and antidepressants daily and have recently been put on daily amitriptyline to help me sleep)

I showed this to a colleague at work who immediately suggested going to India with him next year when he visits family, so he could take me to a natural healer to stop me taking so many painkillers!

I honestly just don’t know where to go from here.

I’ve reached out to a couple of people this week, but I’ve just lost the will to try at the moment. It’s exhausting. I need a holiday from it. Not an actual sitting on a beach one. Just a break away from even thinking about the bullshit that is pain.

Maybe after this long weekend I’ll be refreshed enough to care about it.

Thank you to those who have stuck with me. It means a lot.

The message this morning from a friend in NZ restored my faith in my friends. So this post is for you Emma. Love you long time x

Be a bit more thoughtful 

Someone told me I looked miserable the other day. 

That was incredibly thoughtful of them.

I’ve been in pain for 8 weeks and am facing a lifetime of more of the same.
It’s safe to say that that thought wouldn’t make anyone want to jump for joy.

Im trying. I’m trying so fucking hard to not let it ruin my life and be the fake happy person you want me to be all the time. But I can’t do that and I won’t do that just to please you.

I struggle through for my patients and my own sanity and I’m not in the least bit sorry if you’re not comfortable with that.
I have to get through this any way that I can and without a doubt I’m going to have days where I don’t want to pretend to be happy or that I’m coping in the slightest.

This hand I’ve been dealt it shitty and I have to deal with it in my own way.
If you’ve seen me at work you’ve seen the good days.
You’ve not seen the days I have to hold onto the walls to move. The days I can barely stand. The days I can only open one eye at a time in order to focus. The days I spend lying with my face in a vomit bowl.

You have no right to make me feel worse than I already do.

On a better note. My comfort blanket is coming home in a few months. I could write a whole post on how ace I think he is and all the lovely ways he’s made me feel better when I’ve not been well, but I don’t think he’d like that. So I won’t. But he knows how much I appreciate him and that’s all that matters.

 

I know the original comment wasn’t meant to make me feel worse but it did. So just be a bit more considerate when you say things

Yet another test 

I barely slept last night. I was up late chatting to a fellow sick kid who has been newly initiated into the club. 

Its kinda nice having someone know how shit it is to be in limbo, but at the same time i wouldn’t wish it on anyone. 

I managed maybe a few hours but for the most part it was just little 10-20 minute doses. 

In my sleep deprived haze I looked up private ultrasound scans because I can’t stop thinking about how much that prodding hurt. If pushing on something causes pain, we should probably find out what that was and why. 

I emailed someone before the clinic was even open and got a phone call half an hour later. They had a slot at 11am and if I could get to Sutton Coldfield in time, the consultant could scan me.

So I did.

It hurt, as expected and much like every other test I’ve had done, it was all normal. I paid another chunk of money to once again get no further!

I really am starting to feel insane. 

How can there be nothing? The probe was pushing against my uterus and right ovary and it hurt like hell, yet the scan was normal. 

Where do I go from here? What hope is there now that absolutely no imaging shows anything abnormal?

I don’t know what else I can even do now

Now what?

I’ve avoided writing this post for days. 

I don’t know what to say. 

I’ve stopped crying for now at least. 

The appointment on Wednesday was long and intense. I had to recite my medical history for the billionth time, which is hard enough to go through alone but then he asked me about kids and if I wanted them. I hate that question. I hate having to think about my fertility at all. I’d rather ignore it until it’s an active issue in my life. 

Then he examined me. 

I forgot how much that internal lark hurts. The pain took me by suprise and I instantly cried and from there on out the tears didn’t stop for at least half an hour.

He thoroughly went through what he thought may be wrong and the ways it could be treated. Then he dropped a bombshell. 

He’s retiring in the next few months!

That glimmer of hope I once had, had just been squashed. 

He offered to do the surgery but only after a diagnostic op which would cost the £4k. However, he wouldn’t do anything to help during that op. Should I then decided to proceed with the “total radical peritoneal excision” it would cost £25k! 

My heart broke. 

Something I thought could be easily fixed for what I thought was a lot of money was now going to be a 10hr op and cost more money than I could ever get together. Plus there would be no real follow up. 

I was back to square one. 

I cried at my GP yesterday morning. He looked at me with that sad face I’ve seen before. The one that the consultants in NZ had when I wasn’t getting better. The face that says I’m sorry but I don’t know what to do anymore. I hate that face. Doctors are supposed to know how to fix you. They’re meant to have the answers 😔

Forgive me if I don’t want to talk about this to you but as you can imagine, I’m gutted. I paid £350 for almost an hour of false hope.

I don’t know where to go from here. 

The nurses at the spire clinic took me and my motuer to one side, seperstely and spoke about another doctor who they highly recommended and also still works for the NHS. So I could maybe get in through choose and book to see him, but again up north. 

I knew something like this would happen. This was the reason I didn’t want the GoFundMe page set up before I had seen anyone. I’m so pessimistic about my health because I’m used to stuff like this. I’m used to there almost being hope and then it being snatched away. 

I’m not sure what I’m supposed to do with the money you’ve all been so kind to donate at this point. I feel like I should give it all back. 

I feel so lost right now