A New Kind of Fatigue

http://www.sickoflupus.co.uk

Again, sorry for the huge gap in between posts but illness has completely taken over. I did however really want to write about fatigue. I’ve definitely spoken about fatigue before but recently, it’s been something I can barely cope with. 

To those who have never experienced fatigue, I imagine they think “oh it’s when you’re really tired” BUT it’s so much more than tiredness, lethargy and lack of energy. For me, it feels like an elephant is sat on top of me and I’m trying my best to get up but I can’t. It also has me in a permanent haze where I feel sleepy and my legs feel too weak to carry me. I’ve described it before as feeling like you’ve done a full day of work, you’re getting ready to go to bed and as soon as you get into bed, it’s time to get up and start a new day – with jet lag! It’s completely debilitating and I’ve had a consistent battle with fatigue for atleast 6 months. 

My history with fatigue has been that I wake tired and I’d struggle during the afternoon with tiredness which would remain until I went to sleep. Lately, I feel fatigued to the point of tears for atleast 80% of my day and I simply can’t function like I used to. I feel demotivated every day and overwhelmed by things that used to be easy. Below are a few examples of what’s been going on…

Showering: it’s a real task and I didn’t realise that this was normal until I found this image.. 

I get really breathless anyway with lupus and this combined with what should be a simple task is actually so hard. I always find myself resting my head against the wall tiles and closing my eyes for a few minutes because I can’t imagine how much energy it’s going to take for me to get myself out. 

Shopping: I try to have someone with me because this is one of the hardest things for me to do nowadays. Last week, after arriving at the shops, I sat in my car for 20 minutes before I could even contemplate getting out of my car. I parked a few feet away from the entrance but the exhaustion was horrific. 

Work: I’ve had to give in and ask for assistance at work. I just can’t do the hours I used to because the pain is too much and I don’t have the the energy. This is really hard to accept because I feel completely defeated. Once my shift is over, I’ll definitely need to sit for atleast 10 minutes before I attempt to drive home.

Walking: forget it, I just can’t. I’m always looking for a bench or chair. A 5 minute walk will always feel like a mile. 

Clothes shopping: nope. Online only thanks. 

Sleep: oh the irony of being to tired to sleep! 

It may be the sleep apnea, it may be the fibromyalgia but I never feel rested after sleep. On my days off, it’s completely normal for me to sleep through an alarm and finally wake up close to midday. I’ll then rest all day and never actually experience a feeling of alertness or energy. 

Overall, things are really, really crappy and life is so hard. Atleast with pain, you know that there’s a pill you can take to help. There’s no treatment for fatigue. I get tired hearing myself say that I’m “too tired” and I’m also tired of trying to not look lazy but when your body feels like it’s shutting down, sometimes you have to listen to your body and just go back to bed. 

Thanks so much for reading 

XOXO

When the Pain Gets To You

http://www.sickoflupus.co.uk

It’s been 23 days since I went into hospital with chest pains and breathlessness. I’m still really suffering with the symptoms and I feel unusually upset about it. 

I finally got out of bed at 12.30 pm today, simply because I couldn’t get up any earlier. Every part of me felt beaten and bruised and my body just felt too heavy to move. I lay there feeling teary and my day hadn’t even started. 

This has basically been my life for months. When you have chronic pain, you can go a long time without thinking about it. It just is. But then there are times like now when you feel like your  future has been completely decided without you. I honestly feel that this could be a permanent baseline for me and pain will be the most constant part of my life. I feel alone and so frightened and it’s a constant battle in my head as to wether I should be strong and continue to fight or completely rethink my lifestyle and aspirations. 

I think I’m struggling more so than usual because I’ve been to so many medical appointments recently and I’ve probably spent more time with doctors than my actual friends! My painkillers are stronger and I’m taking more of them. I’m also not sleeping and I don’t have much motivation to take care of myself. 

Pain and fatigue has taken over my life and it just seems like I’ll never be rid of this feeling. I can’t see the light at the end of the tunnel. 

I think it’s time to sit down with the therapist again. I see so many doctors about the physical aspects of my disease but I can see that my mental and emotional health may need some attention right now. 

Sorry for the downcast update but this is the reality of a chronic illness like lupus; sometimes the pain just gets to you. 

Thanks so much for reading 

Until next time

xoxo

Blue Badge Nightmares

http://www.sickoflupus.co.uk

Let’s get right into it! I think I’ve approached this topic before but I’m gonna talk about it again today.

Hands up if you have a blue badge? (Disabled Parking Permit)

Hands up if you deal with judgement everytime you use it?

Hands up if you don’t always use it because it’s easier to avoid confrontation? 

I can answer yes to all of these. I am 30, I look relatively well, (just a bit chubby) but I have Lupus and Fibromyalgia – and a blue badge. 

I got my diagnosis 13 years ago and I think I’ve had a blue badge for about 9 years.  Also, I wasn’t even the one who applied for it, my mum made the application as she watched my health decline. I was embarrassed and depressed in equal measure knowing that I’d need to start using a blue badge. This is what the typical badge looks like in England. You get a card that has your picture on the back, badge number and expiration date. You also get a clock to state the time of parking.  You aren’t automatically eligible for a badge either. You are thoroughly assessed by your local council and health professionals who will decide whether or not to award you a blue badge.

Who’d have thought this little badge could cause so much stress and upset for people who really need the help?  

(I should state the ‘aggressor’ I’m referring to, 99% of the time, isn’t a disabled driver. It’s a member of the public who feels they simply MUST intervene!)

The main problem is that I don’t look ‘sick’ and I’m certainly not in a wheelchair. Society still associates disability with not being able to walk. The other issue is that there is definitely a problem with able-bodied people using stolen or ‘borrowed’ badges for their own convenience. I hate being grouped in with these selfish people. 

So what does the badge mean to me?

– Less walking 

– Less exhaustion

– Less pain

And what do other people see?

– A lazy person 

– A healthy person 

– A capable person

– An arrogant, ignorant person who deserves to be reported.  There isn’t enough space on this blog to recall every incident I’ve had whilst using my blue badge. Unfortunately, when I’m stressed or experience adrenaline, I develop pain and pressure in my head and chest. Very often, I WON’T park in a disabled bay just to avoid confrontation with an angry stranger. To my detriment, I’ll leave the car further away, regardless of my pain or fatigue level because I just can’t deal with the stress. When my mobility is affected by a Lupus flare, it doesn’t just impact my legs and feet. It’s my chest and each footstep feels like my heart is ripping out of my chest. My legs and feet often feel like they’re being smashed with a metal pole or crushed in a vise. Most days I get the pain with the fatigue/dizziness and I can predict just how much time I have left before what little energy I have is spent. Still, I look absolutely fine. 

Without fail, I can expect to see people shaking their heads disapprovingly, pointing, people taking pictures on their phone of me and my licence plate, people demanding I show them my badge, swearing and people physically getting out of their cars to tell me just what they think of me. I’ve admitted before that if I hadn’t been diagnosed with Lupus, I might have been a head shaker or a pointer. Through my illness I’ve learned compassion and to avoid judging a book by it’s cover. Even now if I see a boy racer pull up into a disabled bay, I’ll give him the benefit of the doubt.   It’s a blessing and curse to have my illness be ‘invisible’. A blessing in my professional life, a curse when im forced to prove I have an illness that kills people every single day. 

I remember parking in a disabled bay when I went in for chemotherapy, I couldn’t be having a more aggressive treatment if I tried. Had I been in a wheelchair or better still, elderly, i wouldn’t have had a problem. 

And one more thing, parent and child spaces are often closer to entrances than disabled bays but none says a word! We accept that parent and child spaces are always closest to supermarket entrances for instance but none really questions why.

So how do you navigate through a blue badge drama? Many charities like Lupus UK have leaflets and factsheets that you can request. I keep the Lupus UK bookmarks in my car so I can simply hand it to them. Let the info do the talking. Try to keep calm and if you feel you have to defend yourself, try to keep what you say short and concise. 

“I’d love to park in a normal space but I have Lupus and I’m in a horrendous amount of pain.”

” Yes I look ‘fine’ but ask me again in 5 minutes.”

” If you have a problem with ‘people like me’ using a blue badge, it’s something you need to discuss with the council.”

However, also remember that you do not owe a stranger an explanation! Perhaps turn the situation around and say: 

“Congratulations, you DON’T have Lupus and aren’t forced to park here.”

I’m sure many of you will be able to relate to some of what I’ve written today. It’s sad that something that’s supposed to help us, comes with so many problems. 

Thankyou so much for reading. Feel free to share, it may help spread much needed awareness of all invisible illnesses! 

XOXO

http://www.sickoflupus.co.uk 

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

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 

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

11 Things You Need To Know About Lupus

http://www.sickoflupus.co.uk

Hi all, 

Here’s a list with a difference. If you have Lupus, chances are you know all the signs, symptoms and statistics.

I was just sat thinking about the things you don’t see on the medical sites and in the medical books. What are those other things that also occur when you have Lupus? 

1. When people say that they “suffer with Lupus” – suffer isn’t just a verb.

Suffering can take many forms; in my experience, the suffering is physical and emotional. I ‘suffer’ with chest pains, joint pains, widespread body aches, sickness, dizziness, headaches, psychosis, fatigue, depression…

I ‘suffer’ emotionally knowing that I will most likely have this forever. 

2. You rarely just have Lupus and Lupus alone.

For me, its fibromyalgia and depression. For others, there are overlapping conditions like sjogren ’s syndrome, scleroderma, rheumatoid arthritis or Raynaud’s disease. 

3. People with Lupus can often be registered disabled.

When Lupus affects your mobility, you can apply for a Blue Badge. In the UK atleast, if you qualify for Blue Badge, you have the parking rights as any other person with a disability. Many people don’t know that the Blue Badge is for disability and long term sick – not just for wheelchair users.

4. Lupus can be scary as f**k

Pain can come on suddenly causing stress and panic. Lots of us regularly end up in hospital for all kinds of pain and again, a hospital atmosphere can be scary at the best of times.

Knowing that you lack control over your health may be one of the scariest things ever. It’s something I absolutely took for granted before my diagnosis. I often sit and think about how many medical professionals look after my health and I’ve put 100% of my trust in them. However, knowing that someone has your life in their hands is scary.

5. Don’t expect all medical professionals to know about your illness.

Don’t assume that the doctor you see in A&E will even know what a lupus is. I’ve experienced this atleast 3 times. Your GP may also lack knowledge about your condition. My nurse specialist explained to me that in most GP surgeries, there may only be 2 patients with Lupus out of several hundred. There are also hundreds of autoimmune related illnesses so bear that in mind also.

6. Living with Lupus means living with Lupus. 

I’m still finding my feet with this illness and I’ve been living with my diagnosis since 2004. Illness is a lifestyle (for me anyway) By that I mean I’m always balancing my illness with everything else going on in my life. I know that Lupus will always be a part of me and brings a range of barriers and restrictions. For example, I’ve accepted that pain is a way of life for me now, so is fatigue, so is depression, so is medication and so forth. 

7. The Lupus community is bigger than you think.

Being ill can be very lonely; even if you’re lucky enough to have a great support system of family and friends.

We created Sick of Lupus to unite Lupies all over the world. (The phrase Lupies was not created by us!)

Social media is an amazing tool allowing us to network and support eachother. I’ve seen so many profiles on Instagram, groups on Facebook and pages on Twitter that show how strong we are as community. We’re amazing at sharing information, advice and stories as well as forming friendships based on a very special common ground. 

8. Fatigue can be absolutely debilitating. 

I can’t verbalise just how severe fatigue can be. The word ‘tired’ just isn’t enough to describe how it feels to have fatigue. It’s like having flu, jet lag and being dosed up on sleeping pills at the same time. All day, everyday. 

9. Pain becomes a way of life

There’s no escaping it, pain will be a part of your life. It can take many forms but unfortunately, it will always be there. It’s important to get help in managing pain if you’re struggling. There are lots of resources available to you that you may not know about. I had 13 sessions of treatment at pain clinic as well as attending Lupus education programmes. 

You can also try alternative therapies, mediation and graded exercise. If you’re dealing with emotional pain, it’s equally important to seek help. (There’s a blog in the SOL archive about depression if you want to take a read)

10. Despite everything, Lupus can be totally invisible to others

This can be a blessing and a curse. The butterfly rash is arguably the most identifiable Lupus symptom but not everyone has this. I don’t think I’ve ever had any visible symptoms, even during my most severe flares. On one instance, whilst waiting for test results at hospital, the doctor said, “Do you mind waiting out in the reception area? You look fine to me” – 2 hours later, they told me I had pneumonia. 

11. All of the above can make you stronger.

When you consider all that you have to deal with, you can see how living with chronic illness can strengthen your character. Lupus is always with you and can be completely unpredictable. It can stop you in your tracks, ruin special plans, affect relationships, force you to settle, cause endless tears – but after all of this, you pick yourself and start again. 

I think illness forces you to see things from a clearer perspective – from a place of gratitude. You feel grateful for the days that you have little to no pain, for the days that you’re able to get out of bed.

I feel more empathetic towards other people and I feel more informed about invisible disabilities. If I wasn’t going through this, would I care about things like this? 

I’ve heard people say that what doesn’t kill you make you stronger; for now, I think this sums things up perfectly.

Thanks so much for reading. 

XOXO

http://www.sickoflupus.co.uk