Nayu's Craft Time #316 What happened at the pain clinic in August.

Hoping rainbows are in my future (not my photo)

A few weeks ago the scene from my window of blue sky with no cloud could easily have been a balmy heatwave day which I enjoyed without the need for blankets Today the same scene requires blankets to keep me warm and I am totally getting a hot water bottle when I get some lunch within the next hour. It is cold! Yes it may get to a high of 18C today, but it started a lot cooler around 8C which my body is very aware of. This is why I hibernate as much as I can in winter. The day may get warmer but my body won't be fooled. 

Anyway, this afternoon I will be gaming! Had to sort emails and a blog post this morning, got 2 minor chores to do before lunch then I will relax with a mix of My Little Pony  Friendship is Magic and gaming. I would do craft, but I have to go out tomorrow so the less concentration I do the better, to help save my energy for when I need it. 

I'm going to give the short version of what happened at the pain clinic in August. I take my mega meds, ketamine, at home, under the tongue for pain relief (I spit it out after 10mins. It tastes foul if I get it on the wrong part of my tongue. I have been doing this for years, it means I can have pain relief whenever I need it, for instance if I have a flare up. Before I had it I was in agony and felt suicidal on a daily basis. I don't talk about my mental health issues either online or offline, as they are personal. However I need to demonstrate what happened before the magic of ketamine. It was bad. Very bad. I never wanted to go through that again. Unfortunately that could be my future. 

I knew my consultant at the pain clinic had retired and I had a new one. I have always felt uncertainty about how long I would be able to continue my ketamine treatment - it is just the impression I got as it just takes the edge of my pain and it isn't originally used for continued pain control that it could get stopped as a pain treatment in the future. 

I got dealt two big blows at the pain clinic. The first is no one is allowed to have ketamine at home. Ever. There were a few incidents with other patients, not me. No one died, but whatever happened made the highest level of authority in the hospital trust decided that ketamine can only be given in a medical setting. I don't live close to the pain clinic. It would cost so much money to go every 5 weeks or so, a little less in winter, which is how often I have ketamine. I wouldn't be able to have it in a flare up. I possibly would have to wait longer than 5 weeks depending on space in clinics. 

I was absolutely devastated. It takes away my pain relief Independence. It brings back memories of a time in my life I don't want to revisit. There's a lot of fear about my pain relief in the future. However there is hope. The pain clinic in London is going to try and get me transferred to my local pain clinic, which does ketamine infusions and is under 30 minutes away from my house. I have to wait to hear if I am accepted, then presumably have consultation appointments to find out the details of my continued ketamine treatment. I have a few doses left so I won't be out of ketamine until next year. Until I get transferred to the new pain clinic my old pain clinic are giving me an infusion early November to help prolong my supply until I am fully transferred to the new one. 

The second blow was discovering that unfortunately there is currently no other pain medication that I can try for my condition. I always thought there were stronger meds if the ketamine had to be stopped. 

So yeah, the pain clinic appointment sucked beyond belief. I won't talk about it after this post, other than to say when (hopefully not if) I am transferred to my local pain clinic, as that will be a happy day! I am doing my best to stay distracted from how rough life may get next year if the worst case scenario plays out. Terrifying is an understatement. 

I do have coping mechanisms now that I didn't have when my severe pain first started, as I did see a pain psychologist to help with the situation that until it was under control made me suicidal. I do still have depression but I won't talk about that online or offline apart from with God and my doctors. I wasn't going to say anything online, but some of you may have wondered if I did have depression, given I was suicidal a few years ago which I feel I had to mention in this post to explain how devastating the August appointment was. That is why I was offline for a few days as it took time for it all to sink in. The situation sucks. The waiting sucks. Thank God for gaming, craft and dvds!!! Thank you for being patient for me to be able to tell my story for those of you not close friends and family. I appreciate all the support.

Working on staying balanced with what I love