Sticky Blood-Hughes Syndrome Support
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Frustrating times

Frustrating times

Hi one and all

Sorry I have been away for a while - I do keep dipping in and reading your blogs and comments but I have been rather ego-centric for a while so I thought I was better keeping quiet until I was over it. And I am... ha ha funny since I am about to write a blog all about me!!!

So I have been going to loads of external clinics - one of the side-effects of having a transplant! My immune suppressant drugs are strong enough to cause me many other "side effects". So in the last few months I have been to the dermatologist to check for skin cancer, the transplant clinic loads of times, from there i was referred to the breast clinic as I had a cancer scare (thankfully it was all negative), and I have had my six months colposcopy (if you don't know what this is - do not google, ladies it makes your eyes water) but again this is for a cancer... and all this during work hours. It is so tiring! Not that I need to tell you lot that!

I had a barney with a doctor yesterday - I saw him a few years ago and he asked me if i was depressed - I was terrified and cried in front of him (I do not cry) something that made him think that his suspicions were right!! So when I spoke to him I reminded him of this and he had the gall to ask me whether, in retrospect, it had been correct!? I explained that i was trying to hold down a job and a house and recovering from a transplant with APS and Lupus and that life can feel a little overwhelming at times without causing depression.... grrrrrrrr I was soooo angry! Eventually after trying to describe thing the best i could I mentioned that I had been seeing a different doctor because he upset me and I didn't need that. He apologised - HURRAH! (however since then I have got all shirty about the fact that I had to show a vunerable side to get the apology.... I think that's just the girl in me - never happy!!)

But it did get me thinking... do most of us suffer from bouts of low-spells (my other half describes it as a mini-depression) as I will feel exhausted, tearful, frustrated, I acheive nothing, can't relax and find it very difficult to get up in the mornings (I am a morning person)?? I'm not sure if it's an APS thing or a general long-term illness thing or a general life thing...? That's the funny thing about having been ill for so long now - I find it difficult to work out what's normal and what's not and often put things down to my laziness that perhaps have a cause within my blood chemistry? I am so scared about becoming a hypochondriac that I may be excessively hard on myself...? Or perhaps the doctor was correct, perhaps I was depressed but the word conjures up such a feeling that I could never admit it? Hmmmm I am waffling now...

Thanks for reading

(i have attached a photo from my recent holiday to Morocco - watching the sunset in the Sahara!! I certainly wasn't depressed when I was there!)

Take care

Tx x

6 Replies

Tasch you live life to the full and grab it with both hands.... never let anybody take that away from you - and yes tiredness and fatigue is awful with all these things... you are a woman after my own heart, I keep on trying to find new ways round things and engaging with new people and fresh things. Doctors can be so off the mark at times! HAPPY CHRISTMAS Mary F x


Tasch, Mary said all i was going to say and never worry about waffling we all need to let off steam and Happy Christmas to you



Go for it, you are a real fighter for life!

You are an insperation!!!

Have a good Christmas.

As Nelson said "Little victories, Little victories"




Hi Tasch,

It is not suprising that you get down sometimes, especially with everything you have been through and are still dealing with.

Sometimes I get a strong urge to RUN AWAY and be somewhere up high to look at the view.

I think we sometimes forget that the medication we are on has side-effects. I know how depressed I got after taking steroids earlier in the year.

I love your picture of Morocco, it is on my wish list of places to go. I have been frightened lately of venturing abroad (or just going ourt actually) and you have lifted my spirits by being courageous enough to go there.

Thanks for the lovely picture you never know your example could see me getting on a plane in 2012.

Never worry about sharing your feelings on here, we are here to support each other.

xx Sue


There is a little word, well actually two that doctors always forget are possible with people who suffers from any long term chronic condition/s, let alone someone who has had a transplant and all that goes along with that, its called "reactive depression" and its what we all can dip in and out of when the pain and other symptoms over whelm us from time to time. This is an entirely NORMAL process and is a completely different process from being "clinically depressed".

It amazes me sometimes how we, the medically untrained patient needs to fight to constantly remind these pompous and bigoted doctors of this fact because they are so quick to want to pigeon hole everyone into a box of "this is all in your head". Doing so just perpetuates the problem.

So you waffle on as much as you like, you are doing an amazing job and we love hearing from you.

Have a great Christmas X


Hi tasch

will agree with all above.

We all get p####d off with feeling crappy!! I like the term reactive depression!!!

You a tough lady hon!!

Keep fighting, keep smiling!!

Happy new year!!

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)


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