Happy Pills – My Update

http://www.sickoflupus.co.uk

Hello!

Let’s just jump in!

So it’s been a good few months since I took my first ever ‘happy pills’ or as everyone else knows them, antidepressants. For those who are interested, I’m on Citalopram. I’ve never seen any shame in taking antidepressants, I’ve seen them help so many people. 

I wrote a blog about why I started taking them (see blog archive) due to how hopeless I felt. I was rushed onto them after finding myself in a truly awful situation. I could see how my emotions and my behaviour was breaking my mother’s heart and I knew I had to do something.

My GP warned that things would get worse before they got better but actually, I saw a change pretty quickly. I took my tablet at the same time everyday and this routine in itself made me feel better. It could have been a placebo effect for all I knew but I was feeling better so I didn’t care. 

After a few days, it occurred to me that I hadn’t cried. Only I know how I am behind closed doors and it was normal for me to cry most days. 

Being on Citalopram has come with a few issues however. I’ve needed a ECG because apparently it can impact the heart. I’ve also had to stop taking ibuprofen completely because the interaction between the tablet, ibuprofen and hydroxychloroquine can potentially cause a stomach bleed.  

I found this quote on good ol Pinterest and it’s such a brilliant description of how life can feel when you’re, well, medicated! 

Because I’m not having therapy alongside the medication, I know that I’m basically masking unresolved issues. I don’t feel sad like I used to, I do feel vacant though. It’s a very bizarre feeling to get used to. 

The tablets mean im nolonger ruminating about things I cannot change. This is such a weight off my shoulders. Before, I would literally go over and over the same worries and fears, stress myself out, cry and repeat EVERY.SINGLE.DAY.

Here’s another image I found on Pinterest:

  Now, I don’t know if this quote is about antidepressants or addiction.  I can relate in some ways but I also feel that for me, I’m not trying to numb the pain, I’m trying to cope with it.

Physical pain vs emotional pain is such a complex subject. I’ve had the most severe physical pain any person could go through – countless times! but the feeling of heartbreak is in a totally different league. When you’re able to remove the giant burden of emotional pain, you’re left more able to manage the physical side of your illness.

I’ve found that citalopram has given me back some control. It’s also lessened my anxiety. I feel I’m able to process things a bit better, I feel stronger and more able to cope. However, it still feels like ‘Botox for the brain’, meaning I sometimes feel like I’m not responding to situations as I should. I also worry that I’ll be reliant on them forever.

As it stands, there is no cure for Lupus. I’ll most likey have this forever. They told me over 11 years ago that I had Lupus and I’m STILL coming to terms with it. I don’t think you can ever really receive news like that and go forward with clairity and acceptance. As long as you’re living a life that causes you sickness, aches, rashes, fatigue weakness, but most of all pain, there may be a time when you need more help than a friend, relative or doctor can offer. This is where I am. I’ve decided to continue with the pills for the foreseeable future and I consider it just another part of my daily medication. 

Thankyou so much for reading. I know depression is still quite a taboo subject  but it happens. If you’re finding life abnormally hard, please speak to someone. The GP is a good place to start. Lupus UK is also a great resource for everything Lupus!

The first part of this series is called “The Thing None Talks About” and can be found in the blog archives. 

XOXO

http://www.sickoflupus.co.uk

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2016

http://www.sickoflupus.co.uk

Hi all,

I can’t remember the last time I put thumb to iPhone and blogged!
I have 2 main reasons for being slack:

1: I’ve been really unwell.

2: I’ve been struggling with depression again and I don’t like to post blogposts that are full of negativity.

However, this post will be more negative than positive, sorry.

For the last few months, I’ve been really busy and haven’t been living my ‘pacing and planning’ lifestyle.

I have been really terrible at writing this year. Thankyou for continuing to support my blog, I can see that a lot of you are still reading.

2016 has been the hardest year yet. I’ve lost count of the number of doctors appointments, hospital appointments, hospital stays and referrals. I should also take this time to acknowledge the amazing care I’ve had from the NHS. It’s easy for people to criticise the NHS, but I find that they are the ones who don’t spend too much time in hospital and so are unable to appreciate how much of a lifeline it is.

My 2016 NHS snapshot:

Thousands of pills, atleast 3 hospital stays, 3-5 trips to A&E, atleast 10 rheumatology appointments, around 10 GP visits, 3 appointments with a specialist nurse, chemotherapy, 2 steroid infusions, 1 ambulance called to my home, 2 brain scans, 4-6 X-rays, an attempted lumbar puncture, 2 trips to the brain centre, 2 trips to respiratory, the flu jab,2 visits to the sleep clinic, countless phone calls to the rheumatology helpline…

It’s no wonder that I’ve continued to struggle a lot this year with anxiety and depression. It’s impossible not to be affected by the disease itself and the mountain of other things that come with chronic illness. It’s the multiple appointments that you have to balance  with work, the waiting for test results, the constant fear of what might happen, worrying about meeting commitments when you’re in pain or when you’re just too tired. And all the while looking completely fine! (But that’s another blog post entirely)

It’s hard to enter a new year when people around you are setting exciting goals and resolutions and you’re just trying to survive the day. Lupus and fibromyalgia just don’t care about your plans or aspirations and for me, this is one of the hardest parts of the illness.

However, I’ve still made plans! Both personal and professional. I can’t let lupus win, it doesn’t deserve to! 

As I write this, I have so much pain in my chest, shoulder and arms so I’m gonna sign off here. (I currently have costochondritis) 

I’m planning to get back to weekly blogs and to share anything I feel may be useful to others in my position so check back soon!

Until next time X 


Sorry for the delay 

Hi all,

I’m really sorry that I’ve not posted in a very long time but I’ve been incredibly unwell. You name it, I’ve had it. Viruses, hospital stays, medical tests blah blah. Lately I’ve had migraines every single day and the fatigue has been unbearable. 

3 weeks ago, I had a steroid infusion but unfortunately, I didn’t see much benefit. I’m still struggling with the fatigue (I.e. arriving at the supermarket and sitting for 10-20 mins before I can find the energy to leave the car) 

I’m hoping to start writing for you again very soon. In the meantime, if there’s anything specific you’d like me to write about, please leave a comment. 

XOXO

World Lupus Day

http://www.sickoflupus.co.uk

Hi all,

May 10th 2016 is World Lupus Day. The perfect day to spread awareness! 

We all have our lupus stories and I’ve told mine many times. If you haven’t told yours, perhaps today is a good time to let those around you know a bit more about living with such a complex illness. 

I’m not expecting to see too much coverage about World Lupus Day because we have such a long way to go in getting the media to publicise Lupus. However, this year Lupus did get a boost with Selena Gomez admitting to her diagnosis. With 78+ Instagram followers, she did an amazing and very brave thing and I know a lot of us were grateful to see her someone use their influence for a good cause. 

I hope today is a pain-free day for us all.

XOXO

Night Terrors

http://www.sickoflupus.co.uk

Hi all,

So, I’ll try to keep this short, but do any of you have trouble at night? 

For the last few years I’ve been having hallucinations, night terrors, psychosis… I used to think that I was just really susceptible to nightmares, especially when the depression was bad. But it’s definitely more than just nightmares. 

I tend to have 3 or so specific hallucination scenarios that occur, I’d say 3-4 nights a week. If you’re squeamish, perhaps stop reading now. 
1: Bugs – I’ll see a mass of bugs that look like beetles, coming at me down the walls.

2: Spider type things – Similar to the bugs, they crawl toward my bed, up and down the walls. I’ll see webs and spiders all over.

3: Branches – This is the most vivid one as I feel like I hear things with it. Branches start coming toward me really quickly from the other side of the room as if it’s trying to trap me. 

And last week, I had an absolutely terrifying moment where I ‘heard’ a voice whisper Shhhhh behind my head. I was the only person in my room. 

They are incredibly vivid and incredibly realistic to the point that I’m jolted out of the hallucination through fear and panic and I’m terrified to fall asleep again. 

I don’t ever feel like I get into that true restorative sleep and this just makes my fatigue worse. I can be up between 2 and 6 times a night. Another strange thing is that lets say I get up 5 times in the night, each time I go back to sleep, I’ll have a super intense dream (most are recurring) each time I fall asleep. Once I’m awake, I can recall pretty much everything that happened in those dreams, how I felt, EVERYTHING! And that’s 5 individual dreams that I remember. When I get up in the morning, I feel like I’ve been on a roller coaster of emotions and I don’t feel rested. 

At this point, my doctors aren’t sure if it’s the Lupus, the Fibromyalgia or medication. One thing I will tell you is that it’s terrifying when it happens. I can’t tell you if I’m asleep, on the cusp of sleep, awake, I just don’t know what state I’m in when it happens.

I’ve had brain scans, brain tracing, I’ve had my eyes checked, spoken to a psychologist and we’re still none the wiser.

It’s a situation where I get frightened to sleep because the hallucinating is inevitable. Perhaps I need to go to a sleep clinic!

If anyone else has a similar experience, please feel free to comment below or on the SOL Facebook page!

Thankyou for reading, Incidentally, I’m going to bed now…

XOXO

http://www.sickoupus.co.uk

What It Means To Be Sick

http://www.sickoflupus.co.uk

Hello everyone, I’m back! 

I’m so sorry for leaving you so long, especially those of you who subscribe. I’ve been quite unwell and inbetween I’ve been working and trying to pace and plan. I’ve had a hospital stay, X-Ray’s, an MRI and a few minor health issues for good measure. 

Thanks so much for sticking with me. I’m back with a little blog to ease back into writing. This is a short blog about life with illness and how being sick differs from how you perhaps viewed illness pre – diagnosis. It’s really just a quick summary of my observations of late!

When I was little, being sick was very occasional and also very easy to deal with. When you’re a child, you understand that if you’re sick, you need to rest, to take medicine (if you’re lucky, the sugary strawberry kind) and your mum or dad would take extra special care of you. You also knew that it was temporary and in no time you’d be back to school. Most importantly, when you’re little, there really isn’t a fear that comes with illness. 

But once you get older, things change. 

Here’s how.

1. The medicine is nowhere near as yummy:

I can’t remember exactly what I took the medicine for but I remember that it was always an orange or a strawberry flavour that tasted a bit like liquorice and you could always feel the sugar grains on your teeth! 

I remember the very first time that I was given any medication for Lupus (though neither myself or the doctor knew I had Lupus!) I was given anti inflammatories for joint pain and then a few weeks later, steroids for pericarditis. 8 weeks later, they told me I had Lupus. 

Lupus is incurable but as soon as you’re diagnosed, the medications come hard and fast. The cocktail of medications will vary for each individual patient and it’s extremely likely that you’ll tally up an impressive number of pills and sometimes even intravenous medications.

Medications for Lupus can be pretty brutal, namely chemotherapy. It seems unbelievable that we’re treated with such toxic medications for an illness that can’t be cured. Is it worth it? 

2. You’re responsible for yourself:

Regardless of how much support we have, this illness is happening in your own body. The pain, the fatigue, the anxiety, the fear, everything connected to Lupus is happening to the person with the disease. You’re the person in charge of knowing everything about your medications; what they are, when to and how to take them. 

You have to create a life for yourself that almost revolves around being sick. Pain and sickness occurs whenever it wants to.  It doesn’t care if you work full time, if you’ve planned a holiday, if you’re a parent, wife, whatever. This unwanted diagnosis is constant a saboteur but we and we alone are responsible for the daily fight.

Sometimes the fight gets too hard and all you want is to give up. However, there will always be a reason to keep fighting. For me, I have the responsibility to be strong and brave and to be there for my friends, family and my special little goddaughter who only sees me as Shari, she has absolutely no idea that I’m sick. I fight for them.

3. Explaining sickness is complicated:

Rarely do I tell the truth when someone asks how I’m feeling. It’s just a bit too complicated to say, “I woke up this morning with pain in my legs and was too tired to make it into the lounge. Chest pains began at lunch time and my meds are making me nauseous, I also can’t shift this headache and I’m a bit breathless….”

Another thing that’s hard to explain is the concept of never really getting ‘better’. The perfect example is taking a sick day/week/month from work and upon your return, people thinking that you are better. It’s so hard to explain that with lupus, you never get to 10 on the scale of wellness. 

4. Describing pain and sickness varies. A lot:

Stabbing, crushing, sharp, dull, heavy, tearing, sore, arthritic, bruised, piercing,  achey. Also; nauseaous, irritated, swollen, excruciating, dizzy, tender and the old classic, “I think I’m going to be sick”

5. Your diagnosis can impact things you haven’t even thought of:

Where do I start? Travel insurance, applying for a loan, mortgages, life insurance… companies in particular seem to have a problem accepting people with chronic illness. Even the insurers that claim to specialise in helping ill and disabled people draw the line when met with specific conditions. Premiums skyrocket as someone sat behind a desk decides that you are too much of a risk to be insured. 

6. Illness can change you for the better:

I’ve said in previous posts that although chronic illness is devastating, we’re given a really unique perspective on the world. We are able to appreciate the things that healthy people take for granted. A moment without pain is a moment that we are grateful for and  a day without symptoms is like a holiday! 

We don’t sweat the small stuff, in fact, we’d happily trade the stress of planning a party or finding the perfect outfit over our health issues any day. 


 XOXO

If I Didn’t Have Lupus…

http://www.sickoflupus.co.uk

Now, this is a huge concept to fit into a short blogpost but recently, I’ve been going over and over this in my head.

To clarify, I’m not asking “why me?”, I never ask that. I’ve just reached a point where the contrast between my life and those close to me has never been more evident. 
 
This blogpost was inspired by a quote someone shared on Facebook. It was an emotional quote to see, although it’s something I think about a lot. There was something that made me stop and think, “This is really sad. But how could I have known?”

If you’ve been reading the blog for a while, you’ll have seen me write about letting go of a life I thought I’d have and how much I’ve struggled with this. I’ve also written about the positives that can come from a bad situation, those things that hopefully make you a better person. 

Although it hasn’t happened for a while, on the days where I’d be having one of my ’emotional episodes’, I’d ruminate about what could have been. I’d create a picture of the life that I honestly believed I would have if I didn’t have Lupus:

– I’d never have gained steroid weight and seen my entire body change.

– I’d be working in the industry I studied to be in and dreamt I’d be in.

– I wouldn’t need to rely on medication to stay alive.

– I’d be married/with the person I saw myself marrying.

– I’d have atleast one child.

– I’d have travelled, just like I intended to.

– I’d be 100% financially independent.

– I’d never have dealt with fatigue, anxiety or clinical depression.

– I’d be mirroring the life stages of my friends who are my age.

– I’d never have spent so much of my life crying.

– I’d never have lost my twenties to illness.

– I wouldn’t be ashamed of the multiple things I’m ashamed of.

– I’d be happy.

It used to tear me to pieces when I’d let my emotions get the best of me. I’d cry in that way where you can’t breathe and your face aches from crying. I’d blame Lupus for every failure and disappointment in my life because everything changed for me after my diagnosis.

I wanted to get this blogpost out before the end of the year because it’s inevitable that we’ll be looking to 2016 with hope and expectations. In the last few months, I’ve relied on medication to stabilise my mood and I’ve noticed that I’m able to cope in a way I haven’t before. Although not for everyone,  I credit the meds for helping me gain a better perspective and to better manage my issues. 

I’ve learned that one of the hardest things to think about is, “what if I didn’t have Lupus?” It’s a brutal question and there’s really no good that can come of it. I DO have Lupus. It’s real, it’s frightening and every single day is a challenge. All I can do is try to build a life that isn’t always a compromise and to enjoy the experiences that come my way.

2016 is one day away and I’m happy to be saying goodbye to this year. I’m not discounting the amazing, beautiful, hilarious and enriching moments that have happened but in some ways, it’s been one of the toughest years of my life.

I’m nervous for more hospital treatment in 2016 but it’s out of my hands. I’ve been set a tremendous goal of trying to reduce my steroids (doctors orders) alongside body reconditioning. 

To balance out the health stuff , I’ll be officially launching my business and working as a freelancer. I’m so excited to have something that is mine and mine alone; something that gives me instant gratification, purpose and control. 

It’s so sad that a life you thought you’d  have will never be – all because you got sick. But truthfully, the only option we have is to keep fighting and to create the (new) life we want, IN SPITE OF LUPUS.

  
Thankyou so much for reading. Wishing you all the best for the year ahead.

XOXO

http://www.sickoflupus.co.uk