A bit of positive thinking

I’m a huge believer in the power of positive thinking. My whole life I have always been a ‘glass half full’ kind of girl, a ‘one door closes another opens’ kind of girl. It’s probably slightly annoying; even I have to shake my head at myself sometimes.

My Dad has always championed PMA – Positive Mental Attitude. And let me tell you, I’ve been in desperate need of that mantra on many occasions. There’s been days where I’ve rung him stressed to the max over something or another and he’s just repeated PMA at me until the tears subside and I start to feel that horrible ache you get in the back of your throat when you’re trying to stop yourself from bawling your eyes out.

So what’s the point? Well, I’m starting to feel that all this positive thinking is starting to pay off. We’re now just 6 weeks away from the big day I have dreamed about pretty much my whole life – my wedding day. I’m starting to feel quite comfortable in the big city I’ve taken a while to get used to. I’m losing the steroid weight I’ve gradually put on over the last four years. And yesterday, I had the first positive hospital appointment I’ve had in years.

It made such a massive change to be able to walk out of the clinic with my head held high and feel that, for once, my body was cooperating. Last time this new rheumatologist said she thought I had Rheumatoid Arthritis. Since then I’ve had ultrasound scans on my joints – all clear – and special blood tests – guess what, all ruddy clear! I think I breathed an audible sigh of relief as my nurse reeled off these results.

My much-loved rheumatologist was back and strolled into the room with a beaming smile on his face. He’s happy with my progress. The Lupus hasn’t gone – blooming heck, if that was the case I’d be bouncing around the room like Tigger right now – but it’s on it’s way to controlled. And right now, I’m good with controlled.

I know it’s easy for me to sit here and say (type?!) that staying positive makes a world of difference. You lot have seen me fall flat on my face time and time again so I can’t possibly pretend I’m Little Miss Sunshine every day of the week. I can honestly say though that I have always believed that there was a light at the end of the tunnel – it’s just sometimes it felt like the light was a bloody long way away.

This isn’t it by a long shot. There’s still some experimenting to be done and the medication that gives me nightmares is still being bounced around for after the wedding, but I’m feeling in a pretty good place at the moment. So I’m going to take a deep breath, layer on the suncream (the last thing I need is a sun-related flare) and get the hell on with it. I just can’t – and won’t – let Lupus take control.

To the future and “that’s it” – a wedding post

One of my best friends got married this weekend. We have been friends since the first year of secondary school, now 14 years ago. Despite all the excitement in the run up to my own wedding, despite having my own home and a ‘proper’ job I don’t think it ever really occurred to me how grown up we all are until I saw her walk down the aisle and say her vows to her new husband.

Everything had been planned to the last detail. The orders of service adorned beautifully with a photo of the two of them, readings chosen carefully and a marquee set up in her parents garden complete with touches of her favourite colour. There wasn’t a thing that could have been done differently for them, except banishing the incessant rain that fell all day. But in the end even that didn’t matter because we all spent the afternoon chatting and the evening dancing the night away despite being covered in mud and the very real possibility of our cars wheel spinning on the muddy field at the end. They did and we all got a bit stuck for a little while but it just added to the fun spirit of the day.

In the middle of busting out our best dance moves that we have spent 14 years perfecting, I asked my friend whether she’d had a lovely day. To which she replied, “it’s all about all our favourite people being in the same place at the same time enjoying themselves. That’s all I wanted”. And I don’t think that thought ever really occurs to you until you take a step back on your own wedding day and watch it all happening around you. It’s so easy to get caught up in the detail and the stress of the table plans, that suddenly you find yourself wishing it all away and counting down the days until it’s here – not just so you can get married, but so you don’t have to plan it anymore!

I’ll admit that over the last few weeks I’ve wished this time away and wanted it to be over, but as my friend was leaving she hugged me and said, “it’ll be you next and I look forward to it very much”. Whilst in the midst of preparing to say my vows to D and trying not to get bogged down with everyone elses opinions, it did me the world of good to go to her wedding, hear her say those things and see what it is all really about. The marriage, the future and, as my lovely friend drunkenly said at her hen party, “that’s it”.

Weekend Words: Pull Yourself Together

This is fast becoming my most favourite quote in the world. Especially when you just need a massive kick to get over it and get going…

 

And quite frankly, Elizabeth Taylor is just extraordinary!

Have a lovely sunny (hopefully!) weekend.

“Let’s start from the beginning”

I seem to start every post at the moment with a bit of an explanation as to why I’ve gone a bit AWOL recently. There’s no groundbreaking reason. It’s all just a bit manic in Rachel World – wedding dramas and busy weekends, then repeat until absolutely exhausted.

I always promised myself (and you all) that I would be completely honest on my blog. I always wanted to write how I was really feeling in the hope that it may help other people in the same situation but also so, way in the future, I can look back on them and see how far I’ve come. Or see how I came through it before and give myself a bit of a kick to do it again.

To be honest, I don’t remember how the doctors came to the conclusion that I had Lupus and I don’t think anyone really does. The notes from my paediatric team have got lost along the way so there’s no going back to see how things really happened or what my body was doing at that time. My memories aren’t completely reliable because I’ve blocked out a lot of what happened because it was too upsetting to remember. Mum remembers different bits but her perspective as a parent is a little bit distorted. Between us we can probably build up a hazy picture of those early years but nothing definitive. But why does this matter?

It’s only since my last visit to my consultant that diagnosis has come into question. I was greeted by a new rheumatologist and an immunologist who were keen to learn more about those early days. I could tell them about the time frame between falling ill and being diagnosed. I could tell them that they’d thrown around a whole world of conditions before they finally settled on Lupus. I could also tell them that the medication I’d been put on made me so sick I’ve been terrified of it since then. But the bulk of it, the main juicy bits that they really wanted to know were blank.

Back then I was scared. I still am sometimes. I had blocked out absolutely everything in the hope that ignoring it would mean that it would go away. Pretty much all I’ve got left now is what I wrote in my diary – which from a 14 year old probably isn’t that helpful from a medical perspective – and the bad stuff; the stuff that I remember because it hurt and the stuff that could still give me nightmares now if I thought about it enough.

So we started from the beginning. The consultant asked me to forget the fact I was comfortable in hospitals and to forget the fact that I know so much about my body I know what controls it. She asked the questions and I answered them as honestly as I knew how, trying not to put on a brave face or make myself out to be some super-human patient who doesn’t struggle at all. In fact I surprised myself because I started getting quite emotional as I told her everything.

They reckon I now have elements of Rheumatoid Arthritis as well as Lupus and I hadn’t been expecting that at all. I’d been responding well to steroid injections but these just can’t happen long term so the next step is the medication that I reacted really badly too in the first place. I had to blink back the tears as I told her in detail how it made me feel and she responded with “well, unfortunately I think that’s the only way to go from here”.

What do you say to that? When someone sits in front of you and tells you that the only way forward is to put you on a medication that scares the living daylights out of you. It’s a completely irrational fear. I’m 10 years older now, my body is now so used to medication it probably wouldn’t bat an eyelid but it sends me into a panic I can’t explain.

Now a week on, I’m not letting it get to me. I told them I didn’t want to make any changes to my medication so close to our wedding and they agreed. I think a part of me is hoping that by then I’ll be feeling so much better anyway that I won’t need it. Got to love a bit of positive thinking!

This new diagnosis isn’t going to change how I feel day to day because it’s just adding a new name to what’s been going on for years. It’s also not going to change my treatment now and it wouldn’t have made a difference had they decided this any earlier. It’s just one of those things I guess. In all the research I’ve done around chronic illnesses, particularly in the last few years, I’ve learnt that they very often travel in pairs – if you have one, you’re more likely to have another too.

Reading back over my diary entries from when I was first diagnosed are quite upsetting because I’m transported back to that time when I was a frightened teenager who was pretty much convinced this was it. I don’t want to feel the same reading these back when I’m 30-odd. I’d quite like to think I took it all in my stride and dealt with it like the super-human patient I spend my life convincing my medical team I am.

But then they all know me a lot better than I give them credit for, so perhaps they’ve known all along what’s really going on behind the smile.

The long and short of it

When I was little I remember being told that if you brushed your hair 100 times before you went to bed every night it would be really shiny and beautiful when you woke up. So I would sit on my bed every evening pulling a brush through my hair exactly 100 times – no more no less – in my quest to get princess style hair.

As I got older, I realised that it’s so much harder to get blonde hair to shine in the same way as my brunette friends. So I chopped off my long locks into a short bob and then promptly looked in the mirror and cried because it looked strange and I didn’t like it.

I’m now trying to grow my hair again for our wedding this July. With Kate Middleton/Duchess of Cambridge/Princess Pretty as my hair muse, I’d really like a half up/half down hairstyle that will look glam in our photos. I wouldn’t mind the tiara too, while we’re at it…

From "Caked In Make Up" blog

This is the longest my hair has been in years and I have been having an ongoing debate with myself whether I just chop it all off and start again. But the thought of looking in the mirror the day before my wedding and crying because I hate it has put me off somewhat.

At the moment though, I’m fighting a little bit of a curveball. I recently started losing some hair. At first it was a rogue strand here and there and then more would come out when I’d pull a brush through it. The days of brushing it 100 times before bed are definitely long gone, let me tell you.

I’ve discussed it with my nurse and at the moment we’re not sure whether it’s medication related or whether it’s purely down to Lupus activity. I’m heading back to hospital this week for more tests, which should give us a better idea of what’s going on and hopefully what we can do to prevent it continuing. It may not (probably won’t) get to the stage where I lose it all and necessity might just be that I cut it shorter so that it still maintains an air of looking thicker.

As many of you will know, if I have to do something I’m much less likely to want to do it. So whilst I’ve been debating cutting my hair off and doing a Dianna Agron of my own accord, the fact that I now might have to has made me sure as hell not want to!

'doing a Dianna Agron' - chopping off your long blonde locks for something shorter, funkier and still looking fabulous! She pulls it off so well.

I know that I can’t really control what happens next. We’ve just to go with it really and see where we end up. And in all honesty, the hair thing is preferable to the Lupus thing but for us 20-something girls (and girls of any age really), it’s all about looking our best and putting on a smile to hide the pain. It’s harder to do so when people can tell there’s something wrong just by looking at you.

 

 

 

Weekend Words: Plan A

After this week, I’ve needed to remind myself of this.

I’m pretty sure I’m on about plan H or something by now, but to coin a phrase from an ex-work colleague – “We’ll get there”.

My Real World

Writing has always been my go-to point. It’s how I make my decisions and work out how I’m feeling but sometimes I can’t get my head around it and so I store it all up unable to process it all. At times I struggle writing my blog because I’m torn between being the positive Rachel that puts on a brave face for the world and then there’s showing you all the other side. The side that wants to lock herself in a dark room and pretend that it’s not happening anymore.

It’s not easy to put on a smile that hides a million and one real feelings but it’s easier than being honest. And really, I don’t think people want me to be honest because if I was it’d just make things uncomfortable. Everyone I know that’s been through any kind of long-term illness or treatment is guilty of doing this too and quite often we’re only able to open up to each other about our real world. The world behind the hospital doors.

When I started taking my new medication I was told that I wouldn’t start to see any benefits for 6-8 weeks. This is my 8th week and to be honest, I feel worse than I have since I started it. I feel permanently sick, I get overly tired far too quickly and I’m guilty of being grumpy and massively fed up. I have to kick myself out of bed in the mornings and force myself to just get the hell on with it.

After a night of very little sleep I realised that enough was enough and so I called my specialist nurse. I locked myself in a cold, dark room at work – it’s not a torture chamber, just unused – and left her a voicemail. I probably sounded like I was going off the rails. Like I was worrying about tiny insignificant details but my nurse is wonderful.She knows me better than I know myself and very often tells me how I’m feeling when I can’t quite find the words. So when she said the words, “I think you’re a bit sicker than you want to tell me you are, aren’t you?” I had to take a deep breath to stop myself from crying.

Because I’ve just been getting on with it not wanting to admit that anything was wrong. Really though, I knew that the way I’ve been feeling isn’t normal and it damn well shouldn’t be. But I also knew that it meant the medication wasn’t working and the next step was something stronger.

I am absolutely beyond grateful to have that relationship with my nurse. Someone who understands how I feel without me having to tell her. Someone who understands my concerns without me actually having to think of the words to express myself. Someone who thinks about me as a person with a real life and asks what my big plans are for the year so she can plan my medication accordingly so I can still go.

My real world is donning my favourite shoes, slapping on the lipstick and going to work or out for dinner with friends. My real world is also scaring myself silly about losing some hair, being sick in the middle of the night and nervously researching the side effects of this new stronger medication.

It’s such a massive help to have someone slightly removed from my daily dramas who looks at both sides of me and says ‘right Rachel, let’s do this shall we?” And she doesn’t take no for an answer.