Guilt, guilt and more guilt

Tuesday 31 October 2017

Mum-Guilt. That little bastard of a voice in your head that tells you you're crap, you're not doing it right, not doing it well enough, not doing enough full stop, it goes on and on and when you add a chronic illness to this being a mum mix then you're fucked and that's the position I'm currently in – parenting (or trying my best to parent) with a chronic illness.

I'm sure you all know I have Lupus which in short is a chronic illness (for which there is no cure) that causes moderate to severe joint and muscle pain, skin rashes, hair loss, extreme fatigue and can cause inflammation in any organ in the body which in extreme cases can cause death. 20 years ago people with Lupus were told they had a maximum of 5 years to live. Thankfully now most people with Lupus will live a normal life expectancy but do require regular check ups and will usually require medication for the rest of their life. In my case I suffer with joint pain and fatigue but there is so much more to it than just a bit of joint pain. Below I've tried my best to explain what it really means to live with an incurable illness....

Everyone knows being a Mum is hard and tiring but throw in a Lupus flare up and it becomes almost impossible. I couldn't even change Millie's nappy this morning due to lupus related swelling in my hands. That little voice in my head was saying 'What kind of mother are you?'

Gosh, that sounds so harsh when you say it out loud. Wow, my inner voice is rude! But this is the reality of how it feels. Luckily Millie has amazing grandparents who have all taken turns to look after her so I console myself with the fact that Millie is happy going to Nana's/Grandma's house and its good for her to be away from me sometimes but again its that Mum Guilt comes out and tells you that you should be able to look after your own child and not have to palm her off. I know i'm not palming her off but that's what my rude inner voice tells me.

On top of the mum guilt I'm currently (not) coping with agonising pain in my joints (knees, elbows and hands) and severe fatigue which is debilitating.

The pain is so bad that one time I got stuck in the bath and couldn't get out which lead to a full on mental break down and I genuinely thought my neighbours were going to call the RSPCA. I was wailing like a wounded cow. And then the fatigue, jaysus christ it is so horrific, I honestly can't describe how awful it is. It is not like normal tiredness. It doesn't even compare. It's like every single tiny piece of energy has been sucked out of you and leaves you feeling completely deflated. If my body could talk it would be saying 'no, just no.'

Earlier today I needed a wee and the effort it required to physically get up off the sofa and walk to the loo was immense. I held my wee in for ages because I couldn't bear the thought of getting up, like literally, the mere thought of getting up was almost too much. Queue over dramatic hand to forehead gesture.

Right so far we've covered mum-guilt, severe pain and extreme fatigue and then of course there is the work-related guilt as I've had to call in sick for the next two weeks which makes me feel like shit

a) because I like my job and I enjoy working

b) because me being off causes staffing issues and makes me feel horrible.

So as well as pain and fatigue Lupus also brings with it a whole world of emotional turmoil.

I don't even want to get started on wife-guilt. Omg. The guilt I feel when Sami's been at work all day and all I've done is lie down making instagram videos and occasionally getting up for a long overdue pee. And when he has to do the housework as well as his full time job. OMG and when he has to cook his own dinner it breaks my heart! Which might sound so silly but I love playing the dutiful wife (feminists I hear you hiss!) I love nothing more than a spotless home and cooking dinner and generally looking after my family so when I can't do it I get really upset. And sami doesn't clean the place like I do so then I get annoyed because I'm completely mental and have major ocd.

A few years ago I was so ill I was pretty much bed-bound for months and I told Sami I'd forgive him if he left me for a normal person that wasn't ill and I seriously meant it. He chose not to and then we got married so I guess he meant it but wow that was tough. I honestly didn't want him to have to put up with this. Thankfully we got through what was the worst flare up of my life and I was well again for quite a while but you do feel guilty because you're husband and your family got through it too, its not just you.

And lets not forget the brain fog. For some reason when people with Lupus experience a flare up they often suffer with some of kind cognitive malfunction. in my case I become very forgetful and do weird things like put my phone in the fridge or once I put the oven on to bake a jacket potato and completely forgot to put the potato in so you can imagine my disappointment and hanger when an hour later I went to get it out and it was on the side. That poor potato was the subject of some serious domestic abuse.

I'm quite a ditzy person anyway but in the midst of a Lupus flare I am dangerous and should not be allowed out. I usually do lots of silly things a few days before a flare hits me, so I usually know when a flare up is coming and funnily enough the last 2 weeks I have done lots of silly things and Sami has found all sorts of non fridge items in the fridge, or the milk in the cupboard etc. Sometimes I've actually been a bit concerned but its a relatively normal symptom. I had an MRI a few years ago to check that it was just Lupus and nothing more sinister and my professor said 'lets do an MRI to check you have a brain.' Gee, Thanks Prof.

So there you have it, having a lupus flare up isn't just a little bit of joint pain and some tiredness, there's waaaaay more to it and it isn't just me who is affected, its Sami, my family, my work and now Millie too.

I must add that although I've complained and moaned the whole way through this post, I do know how lucky I am and I have so many reasons to be happy and I usually am but right now this flare up has really taken hold of me and I needed to get this off my chest and actually, by doing so it has made me reflect on all the positive aspects of my life of which there are so many. I mean how lucky am I to have a wonderful daughter? A daughter doctors said I would never have! And a loving husband that sticks by me even when I'm moping around crying about my arthritic joints and shouting at innocent potatoes? I mean, that's pretty amazing really isn't it? So, yeah I may have a horrible illness that will never go away but neither will my husband so I guess its all good.

Now, where the feck did I leave my phone? Seriously.

x

Feckin Sods Law

Wednesday 6th May 2015

Hey peeps,

Here I am, I'm back again (to the tune of Backstreet Boys) what kind of name is Backstreet Boys? Seriously? It's literally only just occurred to me what a shite name for a boy band that is! Maybe they should've been called Backdoor Boys. Lolllll. Sorry that was silly. My bad.

Anyway I felt compelled to blog as my last post (precisely 2 weeks ago) was me talking about how well I'd been and sods law, after quite some time, I am now in a horrid flare up.  Lupus is evil I tell you.

So since my last post (you can read it below this one if you haven't already) I've been to Dublin and back with Sami and my parents.  We went to see my Uncle James who was being ordained as a priest.  It was amazing - the whole parish turned up and there were lots of priests from all over the world and the archbishop of Southwark came to do the ceremony.  It was a really lovely experience and I felt so proud of my uncle.  It was great to catch up with all my Irish family as well - I don't see them enough! We also managed to fit some touristy things in whilst were we there like a visit to The Guinness Factory and we hit up a few of the pubs.

We got back last Wednesday and after all the travelling etc I was pretty tired so I just rested for a couple of days then I worked on Saturday morning and went out for my friend Tom's 30th birthday celebrations in the evening and me being me, got totally rat arsed on copious amounts of prosecco. I had a fab time though (apart from falling over on a piano) and then on Sunday we went to his parents house for a surprise BBQ. However on the way there Sami's car broke down so we had to abandon it and wait for my Dad to come and rescue us. We were an hour late and totally ruined the surprise! Whoops! Anyway we had a lovely chilled evening but on Monday I woke up a right mess.  I went to bed totally fine but woke up in a pool of sweat - my t-shirt was drenched! I haven't had night sweats that bad for months so it felt so odd and I forgot how bad it was! It's awful because you wake up shivering from the cold sweat and you just feel so disgusting.  I had to get up, have a wash, change my tshirt and the pillowcase then I went back to sleep and woke up a couple of hours later in the same state. I was due at work at 11am but I felt exhausted and my whole body was hurting so bad, I could barely get out of bed so I had to phone in sick.  I was so upset as it was the first time since working at Waitrose that I've had to call in sick.

It's Just so weird that you can be fine one day and totally immobile the next.  I had quite a lot to drink on Saturday night but I was fine Sunday and I've been in remission for 6 months and had quite a few nights out during that time and never felt like this so I don't really know what's triggered it. All I can think is that it's because I've been so busy and my body is just like 'Nah bruv, you need to chill.'

I really don't know but I've been in bed since Monday and I am so freaking bored.  BOOORRREEEDDD!! Well, I did manage to go to my friends house to watch a film yesterday (The Imitation Game - good film by the way) but Sami drove us there and home again so minimal effort was required (its less than a ten minute walk away lol)  Other than those 3 hours out of the house I've been bed bound.  I've hardly eaten because it's just too much effort to get out of bed and even chewing is an effort.  Seriously that's how exhausted I feel.

So the moral of the story is, don't blog about being well because the minute you do, sods law will come and get you!

It's Sami's 30th at the end of May and I've finally decided what I'm doing for him - I can't reveal it here because I want it to be a surprise but I think he will think I am the best wife in the whole world when he finds out! Hehehe I can't wait to tell you all.

I just hope I'm well for it - I never know how long these shitey flare ups are going to last.  The longest one I ever had was about 4 months. FOUR MONTHS. Can you imagine? I think that's when I started this blog because I was in bed alllll the time and so bored and so sad and I needed an escape. Anyway lets not get all depressing but yeah four fucking months.  I don't think this flare is of epic proportions like that one though as I'm feeling a little better today so hopefully it's on its way out.

Anyway I don't have much else to report and my hands are hurting now (yep even typing hurts) so I'm gonna go to sleep.

Good night and thanks for reading xxx

Wed-nes-day

Wednesday 22 April 2015

Well hello my dahlings!!!

I was just writing the date at the top and even at 29 years of age I still spell out Wednesday when I write it 'Wed-nes-day' Lol who else still does that?

It's been bloomin ages since I last wrote a post....I don't really know why to be honest. I think I just kind of lost some of my writing enthusiasm and I've been quite well so haven't had much to moan about and (this may sound weird) I don't like writing about it when I'm well as I know people with Lupus read this and I don't wanna be that smug person all like 'yeah well I'm fine now' as many of you know, Lupus is a disease that waxes and wanes, I can have months of being horrendously ill and months of being totally fine so although I think it's fine to say when I'm fine I don't wanna brag about it.  Not sure if that makes sense? Shit, I don't even know what day it is half the time so I'm pretty I hardly ever make sense!

I had to ask myself three times what day it was today.  This is me to me (anyone else have convo's with themselves?) Anyway here's my convo,
'Huh? What day is it today?'
'Wed-nes-day Faye, It's Wednesday.'
'Oh yeah so it is.'

2 Hours later...
'What the fuck is going on? What day is it again?'
'Errrmmm, I dunno, Tuesday?'
'No, it's Wed-nes-day you dick.'

Does this make me sound a bit mental? I actually do have conversations with myself, sometimes out loud.  Sami will often say 'what? What was that?' and I'm like 'der! I'm talking to myself' and he just says oh right ok, that's "normal".

So what have I been up to? Well seeing as you asked I shall inform you! I'm still working at Waitrose and loving it, I'm now doing Saturday mornings and Mondays - I managed to swap my Sunday shift which has made life a lot better. I genuinely loved working on Sundays because they are really busy which makes it fun but I was finding it difficult not seeing Sami and not really having a weekend.  I know I wasn't working in the week but all my friends do so the weekends is when they want to socialise and I couldn't, plus I wasn't able to spend much time with Sami and as newly weds it was pretty shit so I now have a nice work/life balance.

As I said earlier, I've been pretty alright health wise for quite a while now and my doctors have confirmed I am still in remission (since December) which is beyond amazing - I haven't had a remission this long before (touch wood) so I'm doing something right!  When I say remission what I mean by that is the disease itself isn't active but I still suffer with fatigue and joint pain/aches/memory problems etc but instead of being every day or random it's only when I over do it.  So when I work on Monday for example, Tuesdays are pretty much a right off, I either sleep all day from exhaustion or I spend it lying in bed in pain and although its horrible, it's only the one day and then by Wednesday I'm right as rain again. So instead of waking up every day in excruciating pain and hardly able to move/wash myself I now only have mild pain/aches except after a full day at work.  I have finally found a way to be able to work and have some kind of life.

I'd love nothing more than to be able to work full time again but right now that is definitely not an option, I think I would actually die.  I did some over time today - a 1pm-9pm shift and I'm a little bit scared about the state I'm gonna wake up in tomorrow! I'm working tomorrow as well but only a 5-9 shift so I've got time to rest beforehand.  I've told everyone I work with about my illnesses so they understand if I need a break or whatever, however I haven't actually ever taken any extra breaks and I've never called in sick which also proves I'm getting the balance right at the moment. Ahhh I hate saying things like that as I'm always worried I'll jinx it! If I have to call in sick tomorrow this is why!

Sorry, I'm banging on about work like you care!

I'm going to Dublin on Monday with Sami and my parents just for a few days and I can't wait! Gonna see some family and hopefully a bit of Dublin.  Sami and I went about 8 years ago so it will be nice to go back.  I still need to pack, I can't believe I haven't packed yet! I usually pack about a week before! For our honeymoon I packed 2 weeks before.  Wow, today's post isn't exactly making me look sane is it?  But it was necessary as we jetted off the day after our wedding and I didn't wanna be stressing with packing 2 days before the wedding and Sami doesn't do his own packing - that's why he has a wife (his words, not mine) I spoil him too much.

It's his 30th in May and I need to decide what to do...I have three ideas and I'm not sure which one to go for, I need to hurry up and make a decision though as it's not far away.  Bloody people and their birthdays.  Feck! I'm 30 this year too.  I don't want to be in my thirties. I don't feel old enough to be in my thirties. I feel like when you're in your thirties you have to grow up and do all adulty things and I'm not ready yet. I feel like I should be 24. Yes, I'm 24.

Right it's waaaayyy past my bedtime (it's 12:10am) how the fuck am I still up? Who am I?
G'night y'all. I'll be back soon....

Feck

Currently sitting here trying to blog but I keep getting distracted by this 'Housewives of Atlanta' bullshit.  What the fuck is this shite? Seriously? All I can hear is a load of rich bitches harping on about the most pathetic 'problems'.  This is actually making me angry.  And what's wrong with their faces? They look like Sims characters or something, I don't know but whatever it is it aint human. One of them just came on screen with her big, fake head and said 'I've got the looks, the dream body, the dream man, I've got it all.' Yeah but you're still a prick.

Anyway I've been trying to write a post for about an hour but all I could write was 'feck.'  This page was just a white space with the word 'feck' written on it for over an hour.  I don't know why I couldn't think of anything.  I think it's because I'm wiped out after working at the weekend. I do Saturday mornings and all day Sunday and lord have mercy pon me, it takes it's toll - I  spend every Monday lying in bed recovering.  I know that must sound so odd to a healthy person but it's true. I wake up most Mondays feeling like I've been beaten up in the night. My joints are stiff, swollen and I feel exhausted, I rest all day or sometimes sleep (I slept for 12 hours last Monday and that was after an early night on Sunday) and on Tuesday I'm usually right as rain again.  So weird what Lupus does to the body. I don't really like thinking about it in too much detail as I'm worried I will feel worse, you know like when you cut yourself and it's only when you see blood you decide it hurts? Before that you didn't even notice you'd cut yourself.  Dunno if that makes sense....this is coming from the girl who could only write 'feck' for an hour.  Hmm not sure I'm quite ready to call myself a writer yet.

I'm seeing my lovely friend Beverley tomorrow - I can't wait as it's been quite a while.  I met her when I worked at a drainage company and she works next door.  We just hit it off and always have such a laugh when we meet up so I'm looking forward to that.  Hopefully I will have some energy tomorrow!

I will soon be eligible for my Waitrose discount card which also includes a discount at John Lewis. Omg the excitement! Sami and I have lots of John Lewis vouchers that people gave us when we got married so I've saved them to use when I get my discount.  We need new everything and I mean EVERYTHING. Every last thing in this flat is second hand apart from our mattress! Even our cutlery was given to us. I can't wait to buy all our own stuff!  Our bed is broken (don't be smutty) our bedroom furniture is a bit past its sell by date and I broke a drawer, we have a sofa that is about 20 years old and I'm not exaggerating (Jaysus Christ, it took me far too long to spell exaggerating. Shit I am not with it lately) we have my Mum's old towels (by old I mean she used them once and decided she didn't like the colour) we have my Sister in Law's Mum's mugs, a load of chipped crockery because I'm very heavy handed and break everything and our curtains, OMG they are disgusting and faded from the sun.  This is not good.  I don't know why we don't have any nice new stuff! So yeah, I'm very excited.  I've lied, we do have something new - our champagne glasses. You see, at least I have the right priorities.

I got some new glasses on Saturday and it's like seeing the world in a whole new light! I can see details and shit! I have HD vision! I was very glad to be told my eyesight hasn't deteriorated.  I was petrified and genuinely thought they were going to say it's worse. Ever since I was three every time I go to the opticians they tell me it's worse. I used to have to go the hospital for my eye tests but they discharged me when I was 16 so I went to Boots or Specsavers or somewhere and the optician (and I kid you not) asked me if I had a brain injury or if I'd been involved in a serious accident. I was like 'erm no, why?' and he said because he'd never seen someone with such bad eyesight that didn't involve some kind of trauma.  Thanks mate.  I laugh now but at the time I was mortified! I have to take extra special care now as one of my medications can cause eyesight problems but the optician checked the back of my eyes and everything is fine.  Also, Sjogrens syndrome can cause eye problems but luckily there was nothing wrong.  I wonder if Lupus itself can cause eye issues? Probably. Lupus is evil man.  I don't think I'll look into it, I'd rather not know.

Urgh talking of eyes, I've noticed my eyelashes are falling out (I have none left in the inner corners). My hair has recently become a lot thinner which I know is a Lupus symptom but now my eyelashes are leaving me. How rude.  Oh well, I'll keep an eye on it (lol) and maybe get some falsies or something.  Give that TOWIE lot a run for their money.  Why can't my leg hair fall out, that would be much more convenient than my head hair and eyelashes. Liberties.

Sami is currently watching the Arsenal Man-u game and I am praying Arsenal win. I can't deal with the losing sulks.  Sami is the least moody/sulky person I've ever met in my life but when his team lose it aint pretty.  I tend to just stay out of his way so I don't have to look at his face. Please lord, don't make have to look at 'that' face. Thanks.

So other than me getting new glasses and losing my eye-lashes I don't have much else to report.

I posted that 'Spoon Theory' thing on Facebook today, I've posted it a few times since my diagnosis but I just love it. I wish I could make everyone I know read it as its such a fantastic way of explaining how it feels to live with a chronic illness.  The writer has Lupus but it applies to any illness and that's what is so brilliant.  Invisible illnesses are hard for other people to comprehend and I get that but it sometimes so friggin frustrating.  I have said in the past I'd like to turn bright blue or green or something when I'm feeling unwell so people could see it.  If I didn't tell people have Lupus etc no one would ever know which is mad.  I don't want it to define who I am but I do like to tell people so that when I'm having a bad day I can say it without having explain the whole long story of what it is etc.  Plus I'm just an open book - it would go against my nature to hide something so significant from people.

It's ok everyone, Arsenal won! I have a happy husband.  I'm gonna go to bed now (I'm currently in bed where I've been all day but I mean close my eyes) I am exhausted. I went to bed at 11pm last night and woke up at 3pm today. I had some food, a bath and went back to sleep until Sami got home at 6pm. I made us some dinner and got back into bed! That's pretty much every Monday for me.  I was supposed to go to the doctor to get some blood test results but I had to cancel because I was so exhausted, there was no way I had the energy to get dressed and walk down the road and back. No way.  I've re-arranged for Thursday so hopefully I will be able to go.  The doc just wanted to run some as it's been 5 months and I should have bloods every 3 months really just to check my inflammation levels and blood count etc.  Nothing interesting.

Right its defo bed time now. Night guys. Thanks for reading. xx

If you don't like it, don't fucking read it.

Friday

I still can't get over the fact it's 2015 and it's nearly March.  How did that happen?  Anyway, just thought I'd do a little update for y'all.  I'm still confused by the fact people actually read this blog. I mean it's great that people do but I still find it weird that people are interested in my waffle.

Some arsehole complained to me after they read a few of my posts and said they didn't like my blog because I swear too much, my answer to that was quite simple 'Don't fucking read it then.'  No, I didn't actually say that, I just said, 'I appreciate your feedback but if you don't like it then don't read it.'

I do swear a lot but this is a blog about living with 3 chronic and painful illnesses so there are going to be times when I feel the need to swear and sometimes a good old expletive helps me to emphasise a point, especially a pain related one. Ah well, that woman can go back to reading Enid Blyton or whatever.

I've had quite an action packed couple of weeks, firstly I went to the dentist and had a filling. I was so brave, I only cried a tiny bit. I am so pathetic when it comes to the dentist, my sister in law came with me to make sure I didn't run away but I was good.  The dentist told me that as a result of Sjogrens syndrome and one of my medications I have gum disease and early signs of bone loss so that was nice.  I wasn't expecting that to be honest but I knew it would come at some point in my life.

Sjogrens is the other auto-immune disease I have which is when the immune system is a bit stupid and attacks the salivary glands and tear ducts which causes dry eyes and mouth. Other symptoms include joint pain, stiffness and swelling, muscle pain, fatigue and memory issues which Lupus can also cause so I have the double whammy.  I can't tell the difference in symptoms except when my eyes are super dry then I know it's sjogrens and not Lupus, sometimes both flare up the same time. Erm so yeah anyway as I was saying, when you have Sjogrens you are more susceptible to gum disease and tooth decay because your mouth is dry and doesn't get rid of bacteria as effectively.  I know someone else with sjogrens who doesn't have many of their own teeth left.  And the bone loss is due to steroid medication.  I've done a whole post on steroids and the awful side effects because there are so many - if you scroll down to the bottom of the blog you should see it - it's one of my most popular posts for some reason.

So after my gum disease/bone loss scare I decided I should probably have my eyes checked, partly due to having sjogrens but also because I have terrible, terrible eye sight (my prescription is +7) and I am on a drug called plaquinil which can damage the back of your eye so I should have them checked every 6 months or so. Plus I wear contacts most days and haven't had my eyes checked in over 5 years so yeah, it was time.  Thankfully all is well and my prescription remains the same which was amazing news as since the age of 3 every time I've had my eyes checked they have deteriorated so I was super happy. I got some new glasses which was a nice treat - £329 though. Never mind at least I have some nice glasses now.

I also went to see my GP as my hand keeps swelling up - here's a pic of it yesterday:

She said it's probably a repetitive strain injury from work but personally I don't think it is because it swelled up yesterday and I had a chilled day all day and haven't been at work since Sunday.  Anyway she told me to take anti-inflammatories everyday for 2 weeks and come back if it's not better.  The only problem with that is I take aspirin every day for my blood so I've already been doing what she told me to.  She also sent me for a blood test to check the amount of inflammation in my body in case it's lupus related and I have to see her in 2 weeks to discuss so we will see.  God only knows what's going on.  I don't think it's Lupus because usually it's symmetrical and I'd have pain and swelling in both hands and probably other parts of my body but I haven't so I have no idea.  I'll just have to wait and see.

Bloomin exhausting keeping on top of all the things Lupus/Sjogrens can do/does to your body!

I don't really have any other news.  Ooooh I did have my hair cut today which was nice.  Wow, I've really been looking after myself lately! My hair is a lot thinner than it used to be due to plaquinil so although I'd love to have it long I think it looks fuller when it's shorter so I got over trying to have long hair and went for the chop.  I've had really short hair before when I was on the chemo drugs but I hated it, I think it was because it was too short and the fact that it wasn't my choice but this time it was my choice so it's not so depressing.

Ohmygod I do have other news - I checked how many views my blog has had and it says half a million.  I don't know if that means that many people have read my posts or if it's just people clicking on it and then obviously there are regular readers but still, half a mil?? I have no idea but last time I looked it was 30,000 and now it's 450,000.  How?? I genuinely do forget people read this, to me it's just like a little diary or a way to vent, it really does help me, especially on the really bad days where I'm in so much pain I don't know what to do with myself. I come on here, type some shite, get all my frustration out, press enter and it feels like it's gone then I get a message from someone else suffering with lupus or another painful disease and they'll say my post made them feel better or they understand how I feel and then I realise I'm not alone.... That was quite deep wasn't it? Hahaha lets all hold hands and talk about our pain and emotional turmoil. Hahaha sorry about that!

For once most of what I've had to say is positive (apart from the fact that I will probably be toothless in a few years) but hey, that's a while off yet so lets not think about that for now.

Right, I need to go to bed - I'm up at 5.30am.  It's very odd working at 7am on a Saturday, I haven't worked at the weekend since I was 17! Na-nights. I hope you all have a lovely weekend. xxx