A little (long) update.

So, after trying to organise my crazy mind into some sort of order I'm going to do a little update post first and follow it up with other posts about things I've been getting up to/non medical bits.

As you know chronic fatigue has been a big problem for me since transplant. Pain has also been a huge deal for me. Last year I was put on a mega dose of steroids to hopefully improve the fatigue, which they did. However, steroids have massive lists of dangerous side effects, including weight gain, thinning skin, hair loss, diabetes issues, mood swings, depression, bone thinning, and tonnes more. So the plan was to start off high and lower gradually to the point where I'm at the lowest dose while maintaining the benefit of having more energy. It's extremely unpleasant to change doses as I got a barrage of side effects everytime I did it. It's also mentally very hard as at times, I have felt that people and health professionals have thought I'm "a bit tired" when in fact I'm so painfully exhausted that it's comparable to pre transplant in terms of not being able to plan for the future because of fatigue and associated nausea, pain and dizziness. I have been through hell health wise, trust me, if it wasn't a big deal I wouldn't be bringing it up. 

Anyway after a crappy time lowering the steroids I'm kind of done now I think. I've managed to go from 30mg down to 16mg. I did go lower but lost all benefits. At 16 ive been not as good as poss but not as bad as I was which is fine with me. During the lowering my diabetes went crazy (side effect) so I've been seeing the diabetes consultant and am on my usual insulin for meals and a long lasting insulin overnight. It has taken a really long time to get them back under control and return to lower doses of insulin again. When I saw my dr in January she was really happy with my progress and control which is again really important as bad control can affect vision, your feet, things like wound healing and can lead to amputation of limbs if left to run rampant for long periods of time. Scary stuff.

Anyway, things are approaching "normal" which is nice. Having a bit of a blip last couple of days which I must admit is difficult to cope with. I've had hot and cold sweats, terrible exhaustion, dizziness, shakiness etc but am hoping ive done too much. I'm trying really hard not to think worst case scenario but I think it's also necessary to think that while it's been the hope that the fatigue might be almost eradicated, it's safe to say it will remain a part of my life, although hopefully not to the extent of today! If I had to go out today I would need a wheelchair because my body would just not cope. It's really hard to feel your body is letting me down again.
I'm hoping now that I can start doing some things to improve my skin, lose some weight etc that will be less like throwing stuff into a black hole and actually see some results! 

Mentally it has been rough. Both diabetes control and steroids really effect my emotions and ability to cope. Add in other things like weight gain, moon face etc that affect confidence; the yoyo of emotions that go with these; having to deal with feeling rougher than usual; not really having a baseline health anymore and then day to day small dramas has been so so hard. Anxiety and depression have definitely had their moments these past few months and again, I think acceptance that they will always be a part of life to some degree is hard but necessary to realise. I have been having a lot of flash backs and intrusive thoughts about my time in Intensive Care, so I have been having sessions with my psychologist to talk through my memories properly. I also took the big step of visiting ICU to see it and challenge my perceptions. Must admit, scary still but different entirely from what I imagined it to be like. I think it's definitely helped. 

The rest of my anxiety is either nameless (worse as I have no idea why and therefore can't do much about it) orto do with social situations. Bizarrely in mundane non scary situations as opposed to situations where I could see a legitimate reason to be nervous! 

There have been times when I've talked about my depression and anxiety with close friends but wish I hadn't. However, I can also vouch that a lot of people I have told have been great and are really supportive in tiny ways but which mean a huge deal to me. 

Pain wise things are quite crap. I saw a pain team, who referred me to physios. They gave me exercises to help strengthen my back, saw me twice then discharged me 😔 I have no effective pain relief so haven't been taking anything since before the new year, not because I'm not in pain, I am, but because the side effects of pain relief vs the amount it hurts just isn't worth it. Instead I'm relying on foam rollers, TENS machine, stretches, sports massage and heat pads to help but nothing makes a big difference for any length of time. Basically I am in a lot of pain everyday and feel unsupported in dealing with it. Not good. I'm going to see what my options are and revisit some people to see what they suggest. 

So after that loooong update you're updated! Definitely good points and some things that still need a lot of work but this is where I am. 
I wanted to say a quick thank you as I'm getting more replies/emails etc to posts now which I love! It was great to hear from an old friend Tanya (I'll be in touch soon I promise) and to get a lovely lady via Facebook that she spotted me at our local theatre and was too shy to say hello. Made me feel like a celeb! So hello Elaine and Tanya! 


  1. Next time i'll say hi ...promise! Sorry you are having such a tough time on so many levels. Wishing you good times and health improvements ...Elaine xxxx

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  3. Hi Tor. Just wanted to say I've followed your blog for years and have always sent 'good vibes' (or even 'good vices' as my last phone used to predictive text). I started to follow you as you were linked to Angel's blog. I just wanted to let you know your words and thoughts, so honestly written, do reach the world and, in my case at least, touch us. I am so sorry for your continuing health issues and constant pain is soo soo hard to live with. Just sending love to you and wishing you the strength you need for everyday little things. Linda -Jane (mother to a Cfer who didn't get that call)

  4. Hi Tor,
    For energy try "No-Flush-Niacin", a vitamin B3 analog called Inosital Hexanicotinate, by Source Naturals [www.sourcenaturals.com]. Very inexpensive and fast acting. Check with your MD first of course. I take 1/2 tablet, which is 250 mg, in the a.m. and feel bright and clear headed all day. I'm 83 years old and having a good day for a nickel is exceptional, IMHO. Best wishes.