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

img_1939

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.

 

img_1921

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

 

💜💜💜💜

 

 

Advertisements

I’ve lost my way!

It’s been just over a year since I started writing here, and I’ve completely lost my way with it.

I started it to pour out my feelings, and anxieties about getting back to normal after my drama queen moment, and it helped so much get me through the first year, getting back on my feet and getting back to work.

Even recently, with coming to terms with my limitations, it’s been good to write it down.

Then I decided to document my weight loss journey, and that was a disaster. I’m just not ready to put my whole heart into that.

So I don’t know what this is for now. I do still want to lose weight, and I’m still struggling with my limitations, but I don’t want it to get boring & the same.

The only good thing is we are approaching summer, and I will hopefully get out and about more.

Hopefully inspiration will strike soon, but until then ……

💜💜💜💜💜

Why the Fluff do I do it??

I’m there again!

Fat and frumpy and fed up!

The last few weeks I’ve not been feeling it at all!

I’ve struggled with staying on plan, I’ve skipped classes, I’ve ate my way through days, with more rubbish than I care to admit to!

And the last couple of days I’ve cried.

None of my clothes fit me again, not even my fat clothes, everything is tight, my back is cut because my bra strap is digging in to me & my tummy has scratches from my waist band! My security blanket cardigans are being worn constantly, even at the weekends now!

And I’m in so much pain, my pain is bad anyway, but it just gets so much worse when I put on even more weight! I’ve just got myself a foldaway walking stick because some evenings when I’m on my way home, I just haven’t got the strength to do the 15 minute walk, and it’s quite scary, so figured if I had a bit of support in my bag I might feel a bit better.

And to make myself feel better? I eat more crap!

I truly don’t know what to do to break this cycle, I know I have to, but I’m not quite low enough to actually do it.

I had my antidepressants upped in the week, so I’m hoping that once they kick in I will feel better about myself, and get back on track.

I’ve always been honest about my food, writing everything down, even my bad days, but I’m not even doing that at the moment. Maybe that’s what I need to do.

I’m going for one day at a time! Tomorrow I will write everything! I have my breakfast and lunch planned. And my snacks. I also have enough meals planned for the evenings for the week, so I just have to not eat extras, and I will have a few days of success.

I know I’m also ruining hubby’s weight loss. He has been brilliant, and lost over 2 stone, and I keep leading him astray, and he doesn’t need that.

Hopefully next week will be a more positive tale.

💜💜💜💜

A year back in work

A year ago today I went back to work after my drama queen moment and 5 months off! It was the most scary, exciting, emotional day!

I’m extremely lucky to work with the most wonderful people who welcomed me back with lots of hugs and love and tears.

But it was oh so scary! I didn’t know if I was ready, I didn’t know if I could do it, I didn’t know if I was strong enough! Physically or emotionally!

But being the stubborn madam I am, off I went and a year has passed.

I’m still not sure if I’m ready – physically or emotionally – it’s starting to be hard now! I just started crying on Sunday and told hubby I didn’t want to work anymore as it hurts too much! I have no idea where that came from! I didn’t know I was feeling like that!

I think it’s just because the pain is so bad just now, and my depression is back with a vengeance!

I’m off to the doctors tomorrow to talk about pain management and maybe upping my antidepressants, and then hopefully I can go back to loving my job!

I’ve still got a long way to go till I can give up work, so I want to enjoy it!

Next year – this post will be more positive!

💜💜💜💜

Travels Done

No weigh in this week – I will get to that later!

I’ve been completely off plan! I was in Paris with work! Had the most amazing time! Felt a lot more comfortable with everyone and actually asked questions, and didn’t mind talking out loud – with the Dream Team anyway – I kept quiet when the guests were there – but that’s a work in progress! Learnt lots too, and also had it confirmed in my mind that I still have an awful lot still to find out.

Food was gorgeous. We never moved out of the hotel, ate, worked and slept there. All meals were buffet based. Breakfast was very continental. Cold meats, cheeses, pastries, yoghurts & fruit. As well as a cooked breakfast of sorts. Lunch and tea was lots of fish, and shell fish for starters, prawns, salmon, tuna, mackerel, squid, as well as oysters & muscles – although I kept away from them! Main meals – more fish, but also meat, veg & roasties, which I had. And then a yummy dessert.

Three very long days! We met for breakfast at 8am, and finished tea at about 10pm.

I was knackered when I got home, and booked Friday off! I really didn’t have the energy & my pains had well and truly kicked off. 3 days spent sat on the settee in agony taking an awful lot of pain killers. Brain fog has been awful too. I’m half way through saying something and I forget what I was saying. I go to do something and have to ask Hubby what it was I wanted to do.

Which is why there was no weigh in, I just couldn’t make it this week.

Food has been pretty bad this weekend too, I’m going with the excuse that I needed lots of stodge for energy but in all honesty I just didn’t have the motivation to think.

Tomorrow I’m back on track! I’m doing extra easy SP which is. Kick start! Got to lose this bloated feeling and motivate myself a bit. I’m in a proper rut. I think it’s got a lot to do with being fed up with all the pain too, but ,in the back of my mind I think the extra weight isn’t helping.

Well and truly all over the place just now!

Anyway – I’m going to see my doctor on Wednesday to talk about pain management and possibly up my antidepressants -they’re having a hard time keeping me happy just now.

And hopefully things will settle down a bit.

Hope you’re all doing well

Till next week

💜💜💜💜

Mixed Bag!

Week 8

15 stone 7.5lb.

3 stone 7.5lb to goal

0.5lb loss

37000 steps

Bit of a mixed week! I had good and bad days with my food. I was either exceptionally good or exceptionally bad.

I’m struggling with my pain just now, most days I’m in agony, I’m taking lots of pain killers, and feeling sorry for myself. And I’ve always been an emotional eater, so I’ve been picking. But deep down I really wanted a good week, which is why the good days have happened.

I’m happy with 1/2lb loss! Yes, I wanted more, but I’m beginning to realise that this is going to be a slow and steady journey. I’ve got too many other things going on to want to focus just on eating healthy.

I will be good as much as possible, and I will try and make good choices as often as I can, but if I have a bad time, I’m not going to stress about it. I’ve also made an appointment with my Doctor to discuss pain management & might ask about upping my anti depressants too. I’ve got the best support team though and they know what to do to make things better.

Anyway – other stuff! I had my 30 year work anniversary on Wednesday! It doesn’t feel like 30 years. I’ve been genuinely happy there, I’ve learnt so much, and grown so much. And I work with some of the most wonderful people. They have me, they look out for me, they are there for me, they are my family. And I wouldn’t want to work anywhere else.

I’ve had a moment too! I’ve been dying my own hair for as long as I can remember- I have grey hair to cover – but recently I’ve been going lighter, and have ended up blonde. They didn’t have my normal colour this month so I bought a bleach blonde! And jeez! It worked! Not sure I like it, it’s a bit yellow, but I’ve got lots of purple shampoo that apparently strips the yellow out so fingers crossed.

I’m away with work next week, I’m going to Paris. I love going away, I really do, but I’m tired and sore, and I’m not looking forward to it this time! I’ve also got my confidence & anxiety issues that don’t help! I’ll be fine once I get there, it will fly by, and I will learn lots, but just need to get to Tuesday first.

So! Till next week in my muxed up world……

Much love

Instagram. #michelle1969

Back to Being Me!

I’m not ready to give up yet!

I’ve had a few really bad weeks, but it’s mainly been down to my virus! I struggle every day, with pain and fatigue, so when I get an illness as well, it’s just too much.

Anyway, the virus has gone now, and I’m back to normal – or as normal as I get! And I’m ready to keep fighting, and working, and pushing as much as I can.

Yes – I would love to give up work, and concentrate on me, but that’s not going to happen any time soon, so I’m going to get as much positive out of it as possible, and enjoy it, till my next black spell at least. And I miss my colleagues too much when I’m not there.

Not doing my weekly stats this week, didn’t go to weigh in again – don’t get paid till tomorrow and I’m skint! So figured I wouldn’t bore you with the same figures again . I am being good though, when I get weighed next week I would like to have lost my Christmas weight so I can start afresh.

Till next week

💜💜💜💜

Brain in Overdrive!

Week 5

15 stone 10lb.

3 stone 10lb to goal

No weigh in

19000 steps

No weigh in again this week. I did have every intention of going! Woke up 5 minutes before my alarm, went to the loo, got back into bed, and don’t remember a thing for another 2 hours.

My head is all over the place this week, I think I’ve had too much time on my hands to think.

I know it’s most probably down to me not feeling well, but the ever so wonderful depression is sneaking in again.

I’ve come to the conclusion that I haven’t got the energy or strength to work full time, and live.

For the last year all I’ve done is go to work, and sleep. I get up, go to work, come home, eat, go to bed, and that’s it. Weekends aren’t much more exciting. I go out for an hour or so Saturday morning, make some soup or do some other food prep on Sunday, possibly go out for a walk to our local park and that’s it.

I’m not sleeping properly, even though I’m so incredibly tired all the time. I’m in constant pain, it hurts to sit, it hurts to move.

I’ve tried this for almost ayear now, and it’s not getting any easier, if anything, it’s getting harder.

Now I know all this is due to my Lupus, even the depression comes with it, but I don’t know what to do about it.

I can’t give up work, and I’m not sure I want to, but I certainly don’t want to just work.

I know it’s tough on hubby too, he doesn’t know what to do to make it better for me either, and he worries so very much about me, and I don’t want that, so I’m not talking about it much, trying to hide it, but he sees the pain in my eyes when I stand, or sit for too long.

I figure I need to go and speak to my doctor, see what my options are, but that also feels like admitting defeat, admitting that I can’t cope, and I’m a stubborn madam, I don’t want to give in.

Sure all will be fine once this virus clears properly, but I do need to shake myself up a bit.

Anyway -till next week

Much love

Instagram. #michelle1969

Feeling sorry for myself

This is going to be a very wallowing in self pity post!

Feel free to skip it, and I will return to my normal positive self shortly.

So! I’m not well! I have a viral infection! And I feel like crap!

Now I don’t know if it’s the virus that’s so bad, or the Lupus that makes it worse, or the meds I’m on that make me more prone! Whatever the reason – I wish it would do one!

Started off last Wednesday with a sore throat, and went down hill rapidly from then.

A bit of background – Lupus is an autoimmune disease which means my body basically attacks itself, and I’m on really strong tablets to lower my immune system to protect my body a bit.

Unfortunately this means that I pick up anything & everything.

It’s currently 1am, and I’m lying in bed in pain!

Everything is hurting, and I mean everything! The worst pain is in my legs, my shins and ankles, and my hips! But my hands are bad too, and my shoulders.

When I stand up at the moment, my joints are in agony, and I have to stand for a minute or two for them to adjust to the new angle! I’m having to go up the stairs on all fours as my knees can’t support the weight while stepping!

I’m struggling to hold my phone, actually, I’m not holding it, it’s laying on my pillow & I’m typing with one finger.

On top of this, my throat is sore, it hurts to swallow! Although I have found that whole meal toast scratches my throat and gives me some relief! My nose is streaming! I’m doing a very good impression of Rudolph! And I have the most awful hacking cough! That alternates between making me sick and crying!

Been to the doctors and she’s signed me off work for 2 weeks! My chest is clear at the moment, but I’m to do deep breathing exercises to keep it that way! I have a slight temperature and a slightly inflamed throat. Nothing to risk a course of antibiotics just yet! I’ve just got to ride it out for now. Plenty of fluids, plenty of painkillers, plenty of rest!

I’ve got my normal bloods in the morning so that will put my mind to rest that it is just a virus and not a flare! I do know it’s not, but no harm in being sure!

I hate being ill so much, I hate not being able to have fun with hubby, or just enjoy being with him! Both of us work full time and are shattered when we get home, so our time together when we are awake is precious.

I hate being ill so much, I hate seeing the concern and worry in my sons eyes! He really struggled when I was bad, and he is so protective of me now!

I hate being ill so much, I hate worrying my mum & dad! They want to look after me, and they struggle with not being able to.

I hate being ill so much, I hate hearing my friends worry about me!

I hate being ill so much, I hate not being able to do things around home! I don’t do an awful lot anyway, but putting the extra pressure on hubby to look after me as well is horrible.

I hate being ill so much, I hate letting my boss down! I love my job, and enjoy it, and have a lot of responsibility & I can’t be there to get it done!

My dying swan act is still very raw for my close ones, and I know how difficult all this is for them.

The sooner I get over this, the better! So Doctors orders will be followed.

If you made it this far, thank you for listening! Normal service will resume shortly.

💜💜💜💜

The best laid plans …..

Week 5

15 stone 10lb.

3 stone 10lb to goal

No weigh in

24000 steps

Floored this week. Wednesday afternoon I started with a sore throat, nothing much really, just a bit dry.

Thursday morning, just after midnight I woke up in agony! Literally everything hurt, my feet, my ankles, my shins, as well as all the normal bits that hurt daily, only so much worse. And my head! I have no words!

I honestly couldn’t lie or sit in any position as it hurt to touch anything, I didn’t know what to do with myself.

Took the day off work and phoned my nephrologist who told me I needed to speak to my rheumatologist. He thought it was “just” a flu bug, rather than a flare, and told me to drink plenty, take regular pain killers – which I do anyway, and bed rest. If no better on Monday I should phone back. It was a relief to know they didn’t think it was a flare – that was freaking me a bit.

And that’s pretty much been me for the last 4 days.

I’ve stopped crying with the pain now at least, but it’s gone to my chest and my nose has kicked off today. But I slept last night, which is the best feeling.

So no weigh in, but I did sneak a peek on my scales, and I’m happy with how things are going, at least I haven’t had the energy to go off plan either.

I’m beginning to realise there’s more to this Lupus thing than I first thought. Yes, I know it’s serious, and I know it’s bad, and it’s going to effect my life, but I’ve had a couple of bugs in the last couple of months, and they have both completely floored me. Now I don’t know if that’s down to the Lupus, or the meds I’m on, or a combination of the both, but whatever it is, it’s not good, it’s getting me down, and really struggling to find the positive in all of this just now. I hate having no control, I hate not being to get up and fight through it, I hate having to give into it, I hate being unreliable.

Anyway – till next week ….

💜💜💜💜

Instagram. #michelle1969