Where to Begin!

I think I need to talk things through! I’m in a bit of a mess just now, and I need to sort it out! Or begin to anyway!

For the last couple of months I’ve been feeling odd! Not quite right, as though the smallest thing will break me & I don’t know what to do about it!

I’ve seen a couple of things recently too that have hit home with me! Well I’ve seen lots, but these two made the biggest impact and made me cry, so I figured this is as good a place as any to begin


The first one – I need to think about it!  I need to say out loud just how I feel about it all.

So here goes!

Being in hospital, and everything that happened to me, was a shock, and it was tough, so very tough!  But I think it was worse for the ones around me.  I just lay there and let everyone look after me.  I tried to stay positive and for most of the time I was.   I don’t really think about that much now, unless we are watching a hospital program and something reminds me of what happened, and then I hold Johns hand tight, and hold back the tears.    It was tough though, and maybe I should think about it.  Remember that I nearly died a few times, remember that I had 3 operations in 4 days, remember that I lost a kidney, remember my allergic reaction to the antibiotics that almost killed me too, that caused me to shed all my skin like a snake, after blistering, remember that I had pneumonia and needed a chest drain to be able to breathe , remember that I needed to learn how to walk again, as 9 weeks spent in bed caused my muscles to waste away so I couldn’t hold myself up.  Remember the dialysis, and all the needles I had, and the tubes hanging out of me constantly as my veins kept collapsing, remember the Doctors sitting with me for hours trying to find veins, and even getting a machine that could highlight them, the scars still remind me of that, remember waking up and hearing a drill, and asking what it was, it’s not something you expect to hear in hospital – turns out they were drilling into the bone in my leg to try and get a line in there.

I never realised it at the time, but that was by far the easiest part of all this crap.    The hard work is only now becoming apparent, glaringly obvious actually.

When I first came out of hospital, all was good, I was home, and I was improving, and I was gradually building myself up day by day,  getting ready to go back to work, and return to normal, I had something to focus on, something to aim for, and I did it.   I got back to work 3 months after coming home.

Looking back now, it was too soon, and I’m not convinced anytime would have been too soon, I’m struggling with work, it’s just too hard, I’ve gone from loving my job, and being excited about new challenges to just wanting to get through the day and get home so I can sleep.

Im struggling more now than I ever have.

I’m tired all the time,  I hurt all the time, I’m fed up of getting infections and them flooring me.

Dealing with this day to day is hard enough without having illnesses too.

I hate not being able to do what I want to do, everything that I used to take for granted, it hurts so much that I can’t go running anymore.   But the worse thing I think is that I haven’t got the energy to try.  My stubbornness is failing me, big time.   And I don’t know if that’s because I’m still getting over my latest viral infection, or if my depression is flaring up, or what the problem is, but I just can’t be bothered.  I’m happy to sit here and do nothing.  And I don’t like that, not in the slightest, it’s not me.

And that brings me on to my second picture.



I hate having to rely on John so much, I know he doesn’t mind, and he’s quite happy to look after me, but it’s not fair, I do try and do bits, and stay up a bit later to be with him more, but I’m just worn out constantly.   I don’t want to talk to him about all this as he worries about me enough, and he knows I’m a basket case anyway without going into it completely.     And I know if I start talking I won’t stop, and I will break, I’m bad enough just writing this.   I really want to be brave for him, but I’m not.   I keep crying at odd times, when I’m at the doctors, or when someone talks to me about it, or when someone mentions my kidney having an off moment – really lost it then!

As as for the future!   This is the bit that completely freaks me out.  I’m scared, so very scared of what’s going to happen.  I’m scared that I won’t be able to work anymore, I’m scared that I will be able to continue working.  I’m scared that I can’t do my job properly – I do know I don’t do it as well anymore, I’m scared that I’m letting my boss down, and he is so damned understanding and thoughtful.  I’m scared that the travelling is going to be too much, and how the hell do I tell him that when he has so much faith in me.

I’m scared of what’s next health wise too, I’m scared that I will have a flare, and won’t realise in time.   I’m scared that my memory is going to get worse, I know it is already,  I struggle with remembering what I’m doing, I have to ask John what I was going to do, or stand for 5 minutes and concentrate trying to remember.  I can’t multitask anymore, and I was always so very good at that.  This isn’t helping with work either

I’m scared, really scared that I’m going to get worse, with my pains,  and my fatigue.  Although at least that would mean I had to make a decision about my future with work.  I have started looking into it, just in case I need a back up plan.

I worry about John too, and Jack, although I protect Jack from it as much as possible, he doesn’t know quite how bad I can be, but John knows, and he worries about me, and I know he would give anything to take it all away from me, and he looks after me so very much, but he’s got his own stuff going on, that takes a back seat, because I’m such a drama queen! I’m not actually – but I do feel like I am.

I’m hoping that these two weeks off will help, will settle me a bit, and build my strength back up, and my positivity.  That’s the thing I’m struggling with the most, the not being bothered to fight this, that’s not me at all, but I’m putting it down to still not being right, and I will improve.

I do think I need to start writing here more regularly though!  It always did help, and it’s been good to cry today and put a bit of sense into it


Thank you for listening






This Week!!!  

I am in such a mixed up state just now – and more about that in a minute.  First an update on my goals I set last week.

I got halfway there!   3 out of 7 days I kept within my calories, 4 out of 6 days I exercised.  Not great, but a massive improvement from the previous week, so I’m ok with it.

So this week!  Last Friday my boss phoned and asked if I could go to our head office next week. He was supposed to be attending a two day training course, but he’s been called away so wants me to stand in.

Now – I’ve travelled with my job for the past 5 years, and it’s never been an issue, and I love learning new stuff, so that’s good.

The mixed up ness?  Well, this is the first time away from home since I came out of hospital, my first time away from hubby and my son, and I’m scared.  I don’t know why, I have no idea what I think could happen, but I can’t stop crying.  I know I will be fine, it’s something I’ve done so many times before, and my health has been settled since I came home, so nothing is going to kick off there just because I’m away from home.   I’m going to miss my two so much!  

There’s also the brain fog, and the anxiety and lack of confidence that comes with the Lupus, will I be able to walk into a room with a load of strangers?  Will I be able to learn this new system?  Will I remember how to get there?  Will I be able to handle the 4 hour journey, with suitcase and laptop?   And do it all again coming home?  

I’ve also got to now do a weeks worth of work in 2 days, so once I’m back in the office tomorrow I’m not going to have much chance to stress, not till I get to Tuesday evening anyway.

Today – I’ve been out for my C25K, I’m on to week 3 now, and the rest of the day will be spent emotionally eating.

Oh – and one more thing – our head office is in London ………