The Lupus Awareness Month Diaries: Day 21

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Wouldn’t it be great of you could take a holiday and leave your mind behind? Just a thought.

Anyway, hello!
I’ve been blogging for 3 weeks now and I can’t decide if it’s gone quickly or slowly? I’ve never documented my life before and certainly haven’t shared so much of myself. It’s been both liberating and scary! I hope you’ve found some help/common ground/inspiration if you’re going through illness or if you’re reading to gain a better understanding because you know someone with Lupus.

I’ve not had too much pain today, just the usual episode of chest pain. I slept in quite late today and I could easily go to bed now.

I was up late last night because I went to see a show and had the best time! I did it like disabled person though and used the live access system. Because I’m unable to stand for too long, we chose seated tickets but in the area set aside for wheelchairs etc. I’ve had to do this a lot if I plan to see a concert or a show because often I book so far in advance, I can’t predict how I’ll be feeling. It just made the whole experience so much easier and we could relax and enjoy the show.

I think it’s been a over a year since I saw live music. It’s one of my favourite things to do. It’s escapism at it’s best.
Year’s ago when my Lupus was less active, I used to go to so many concerts. I remember queuing for about 7 hours to see Madonna because I wanted to be close to the stage then stand for 3 hours for the show. That ship has sailed.

I’ve been feeling quite low today and I think it’s because I had such a great time last night but this morning it was back to reality. I’ve got the rest of the month off and so the sensible thing to do is to get lots of rest. I appreciate that I’ve got this time but I’m already feeling restless and bored. Boredom fuels frustration and I then become angry. I’ve definitely felt angry today and I don’t feel anyone around me quite understands.

I’m noticing a slow slide back into depression so I’m trying really hard to cling onto happier thoughts. I have a rheumatology appointment soon and I’m anxious about it. We’ll be looking at new treatments and a game plan for 2015. These appointments make things seem very real and I find it really frightening. For this reason, I think the moodiness is justified. #LupusSucks

Til next time, X

http://www.sickoflupus.co.uk

The Lupus Awareness Month Dairies: Day 20

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Good evening!
Today’s post is not so much a diary, I just fancied a chat.

I found the following quote recently and simply thought, ah that’s nice. But then this morning I thought about it and realised it perfectly sums up my and perhaps your life too…

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The life you have before illness is a completely different life after illness.
Everyone is different and so has different experiences in coming to terms with their new life. For me, my diagnosis came at 18 and just before university. I moved away from home to go to uni and was on my own for the first time.

Every day was a test for me as I started to live my life with illness. Quickly I found that I couldn’t be the ‘normal’ student that you’re expected to be; i.e. Be out most nights and still function for uni the next day. I look back at my uni experience as 80% struggle and 20% enjoyment.

Moving on from uni, I went into full-time work. I’ve said in a previous post that I soon found that impossible. In stages, I cut my hours down to half and then even less and then to nothing atall.

About 3 years ago, I learnt about pacing and planning. Basically, they theory of boom and bust.
I think a lot of people with chronic illness are seen as stubborn because they refuse to slow down, in spite of pain and fatigue. I used to be that person and to be fair, I probably still am!

Pacing and planning was explained to me during an lupus education programme. The physiotherapy team explained how by pushing through pain, we are causing more stress and damage to ourselves AND extending the time it takes the body to recover.

Most days, this is always in the back of my mind. It’s the negotiation I make with myself that if I rest before and after work/socialising/other commitments, I’ll have enough energy and feel well enough to participate. It’s also my way of trying to maintain control over my illness.

Obviously, pacing and planning isn’t a guarantee that you’ll ever be ‘well enough’ but it definitely makes sense. When pacing and planning doesn’t work, it’s guaranteed to really depress me. I’ve missed birthdays, days out, New Year’s Eve, work, concerts etc even though I took the time to rest beforehand.

Over planning definitely kills magic because it hampers spontaneity, you can rarely be impulsive because it becomes an irresponsible act!

I guess the point of this post today was to complain about having to live this way. I really resent having to be so strict when really, lupus isn’t going away if I pace and plan! However, when I don’t, my body certainly knows about it.

Til next time X

http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 19

http://www.sickoflupus.cok

The mind. What a indecisive little bugger!

Yesterday I spoke about feeling happier and more positive but then today things haven’t been great atall.

I didn’t sleep well (strike one) then someone in my building came home at 6am making a ton of noise (strike two) By the time my alarm went off, I could not find the will, energy or strength to get out of bed for work (strike 3).

It’s been downhill from here really. Today I’ve just felt like I’m slowly unravelling and everyone can see it. Work was really challenging today and that just amplified my struggle. It felt like I put in the hours of hard work but with zero payoff.

When I’m having a day like this, my mind goes into overdrive and I start making a mental list of my struggles and my failures. The list today is huge!

I’m really upset that the weekend has taken such a negative turn. Especially when I know that others are having a much worse time. This then makes me feel guilty and so I add ‘bad person’ to my list!

I’m really struggling with feeling caged in and stifled by my health at the moment, in particular the determination I have to do more and the reality of my limits to do more.
Career-wise I want so much more for myself. I want to grow my own business and actually start investing in my future. But in reality, I can only work part time which means living on a tiny income. All because I have Lupus.

When I used to have regular psychotherapy, they’d get me to fill in the same questionnaire every session. It was to score your depression and anxiety. Two of the questions were, “Do you sometimes feel slowed down like you should be doing more?” And “Do you feel restless like you should be constantly on the move?” I would always answer yes. I still feel this way. It’s so difficult to accept that your body is the barrier to you living the life you want.

This realisation can really impact the way you feel about your body and yourself as a whole. I hear so many people with chronic illness describe being let down and betrayed by their bodies. It’s really sad but it’s a very true statement. When you begin to harbour such negativity about yourself, you create a complex web of negative thinking and negative behaviour. For instance, I’ve totally lost all motivation to cook for myself tonight. I simply can’t be bothered and I just want to sleep the rest of this day away.

To end on a brighter note, I’m going to see a show tomorrow and I’m really excited! I’m writing today off but Monday is a fresh start. I hate being a negative person, it takes up far too much energy – I don’t have that much to begin with!

Til tomorrow X

http://www.sickoflupus.co.uk

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The Lupus Awareness Month Diaries: Day 18

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Good evening folks,
First things first, I DID fall asleep last night! Woohoo! (See previous post)

I’m gonna keep things fairly light tonight as I don’t really have any big complaints. I’ve had a really lovely day. Yes, pain played a part and within the last hour I’ve been getting chest pains, but I’m choosing to ignore it!

It began with breakfast with my amazing friend, who by the way, cycled from London to Paris to raise awareness and funds for Lupus UK!

I watched a film later in the morning then went out to do some freelance makeup work. I absolutely love what I do, especially when I’m part of a team.

I’ve noticed that I’m feeling a bit happier recently. I think it helps that my medical appointments haven’t been as full on lately. I’ve also been spending less time alone.

In the past, I’d often prefer to retreat during difficult times. Mainly to lessen the burden of my circumstances. Also, if I was alone, I could react more honestly to pain and fatigue. i.e. scream, swear, cry, sleep. Ironically, I didn’t want to ever seem antisocial but being around healthy people, especially those my age, only magnified the negative aspects of my life.

I’d also get into a bad habit of going onto google and reading a bit too much into symptoms, which would only stress me out and make me really depressed.

I am still a bit of a hermit sometimes but I need the ones I love by my side more than I need to be alone.
It’s also easier when the people you keep close understand your limits and allow you to be you. If any of these people are reading, Thankyou.

Many people think that feeling down comes with the territory. It does. But sometimes I can be feeling really positive and happy but within minutes, something happens to switch my mood. I don’t know if it’s the cognitive element of my Lupus but in those cases, I can’t get my ‘happy’ back. I’m grateful that I’ve not been experiencing this too often lately.

Earlier in the year, I was really struggling with pain, depression and insomnia every single day. As my blood tests were satisfactory, the doctor suggested a connection between my mental health and physical health. Basically, my mind was in such a bad place that it was transferring as physical pain. It makes sense when you consider the physical impact stress can have on the body. E.g. Weight loss/gain or hair loss.

I often think about this and try to avoid the big dark hole that is depression/low mood. I find being creative an amazing way to maintain a happy mind. As a child, I had no intention of becoming a makeup artist but I’m really happy that I’ve found a career I’m able to grow with. I’ll always have the opportunity be artistic and creative – professionally!
The cherry on the sundae is that I’ve also made some great friends through the makeup world.

Long story short(ish), I’m very lucky to have so much loving support when others may not be so fortunate. I shouldn’t be so quick to withdraw from friends and family, they really do make this whole Lupus thing so much easier to deal with.

Til tomorrow,

http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 17

http://www.sickoflupus.co.uk

Good evening!
I suffer with severe ACA. It’s a self diagnosed condition otherwise known as Alarm Clock Anger. I’ve had it all my life and I think I’ll have it forever!

I took a sleeping pill last night, a whole one. I usually take half if I need to be up early the next day as a full tablet is really hard to wake up from.
You can imagine my frustration when 1, 2, 3, 4 and 5AM came and went and I was still no nearer to falling asleep!
When my alarm went off at 8AM I got up but not before using the F word a few times.

Insomnia is one of those really annoying things that a person with chronic fatigue should never have to deal with. Why is the person that struggles to stay awake during the day, the same person who cannot switch off and fall asleep at night? Do you ever get insomnia? If you have any tips, please leave a comment.

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In spite of a terrible night, I’ve had a decent day. Pain-wise, things were bearable and I didn’t have to take much for it. I even decided to do a little bit of organising at home, which turned into tidying the entire flat! I already know that I’ll be paying for that tomorrow…

When insomnia becomes a routine, I start feeling anxious at around 9pm that it’ll happen again. I doubt this helps my ability to nod off!
There’s also no better time to ruminate, over analyse and over think the things that are troubling you in life. When the rest of the world is asleep and you’ve tried and failed to fall asleep, you rarely ever feel this alone. Once you let your emotions fill your head, you’ve got no chance of falling asleep, that’s it. Game over. You may as well put a film on and just plan to take a nap when you should be having lunch.

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Tonight I’m not taking any chances. I’ve already taken my sleeping pill and I’m determined to sleep! I use herbal pills and I’m not sure if it’s more of a placebo thing or if they really do work…

I’m sure you’ll be on the edge of your seat wondering if I do in fact manage to sleep later. I know I am!
I’ll let you know tomorrow.

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Wishing you all very sweet dreams and uninterrupted rest!
X
http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 16

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Good evening!
It’s a super short post tonight!

Today has been a really lovely and a fairly easygoing day. Yes I’ve felt pain (chest, legs, hips, head) but I managed to sleep in today and then go meet a great friend for a gossip.

We talked about lots of things and one of the things we always talk about is me relocating. When I was younger, I decided that it would be amazing to experience living in several different cities before settling down. Even after my diagnosis (within the first 2 years) I still had the ambition to do that.

Lots of my friends live in London and it’s a place I’ve always seen myself living, even if just for 9-12 months. My health however, will not permit that. Quite simply, I cannot work full time. I work part time as I physically do not have the energy to do more. I often call managing Lupus my second full time job as I need to rest as much as I can and my medical appointments alone take up so much time.

I remember after university working a 40 hour week which I had to reduce to 30, then 20 then 16. After a while doing just 16 hours, I had walk away from work for a while. I just couldn’t handle the routine anymore. I had the luxury of living at home during this time and so I could afford not to work. Having that time to rest make me realise just how hard it is to keep up the facade of someone who isn’t tired or in pain.

I always daydream about moving to London but that fantasy lasts about 15 minutes! Unless I could work for £100 an hour and do 10 hours a week, it’s not gonna happen anytime soon!

Days like today, you feel a bit heartbroken when you realise the things you have given up/will have to give up. I can’t tell you how many compromises I’ve made because my health won’t allow it. If you have chronic illness, you’ll know exactly what I’m talking about. What makes it worse is that I have so many regrets about experiences I’ve missed out on and things I didn’t do. Not because I chose to say no, but because I didn’t get the choice to say yes.

Til tomorrow X

http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 15

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Good eve,
So I’m half way through daily blogging and it’s been nice it get things down on paper (So to speak)

I hope you’ve found some benefit and found even the smallest thing useful? Have you taken a look at the website yet? There’s much more practical info about living with Lupus. Obviously, these are just my experiences and rarely do you find 2 people with identical symptoms. The website has more of the medical info that I might not speak too much about on here.

After Lupus awareness month is over, I’ll probably stagger the blog entries but I’m glad I’ve been recording so frequently. It’ll be interesting to read back in say 3 months too see if/how things have changed.

Soon on http://www.sickoflupus.co.uk, there will be an app review of “My Pain Diary”. It’s a really good way to track your medical condition. If you’re like me, your health changes on a daily basis, sometimes on an hourly basis. It can be hard to remember exactly what you experienced and how you were feeling if you don’t write things down. For instance, since the weekend, I’ve complained of migraines, insomnia, chest pain, joint pain, pain in my back and legs, problem with my feet, bruising etc. Next week when I see rheumatology, I may only remember about the back pain and headaches but it’s important to mention the other symptoms too. I can track this all on the app! If you’ve used the app, leave a comment below with your opinion.

I’m feeling ok today, I worked a shorter shift today and so I was able to pace myself. I am however in the usual muscular pain I get from standing for many hours. It’s nice to know that I have a few days off now to rest and recuperate, I plan on doing as little as possible! Knowing I can go to bed tonight without setting an alarm is one of the loveliest feelings in the world!

Til tomorrow,
X

http://www.sickoflupus.co.uk

The Lupus Awareness Month Dairies: Day 14

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Good eve,
I wanted to talk about escapism today. I am a massive daydreamer and my mind is always juggling a thousand thoughts at once (probably why I don’t sleep)

I think I’ve mentioned in the blog before that I love me some reality TV, namely The Real Housewives franchise. I also love watching old movies, singing in my car and reading makeup books. I enjoy many other things too but the ones I’ve listed, I do by myself.

I guess they are guilty pleasures but they are also low energy activities that don’t tire me out and allow me to feel normal for a while.

I used to feel bad for watching ‘rubbish’ on TV until I realised it’s an amazing form of escapism. I’m aware that it has absolutely no educational value but when watching The Real Housewives for instance, I get to see how the other half live, I get to see really pretty things and im taken out of my reality.

The phrase, “escape with a good book” exists for a reason. How lovely is it to leave your own existence for a while and experience someone else’s life?

When you are physically bound to your home during a flare of illness, you don’t have that freedom to leave and you certainly don’t have the energy to. It’s unrealistic for a chronically ill person to get up and escape to the beach or go for a long walk when walking to the kitchen is an achievement.

Yesterday when I was driving to my hospital appointment, I literally sang along to an entire Prince album. I wasn’t even thinking about where I was going or that it was an important appointment. I sat through my appointment and at times I wanted to cry. It’s always hard meeting a new consultant as you have to rehash your entire medical history. After the appointment, I got back in my car and drove home to Lenny Kravitz – singing ofcourse. Had I been on a bus or train, it’s likely I would have been sat ruminating and stressing myself out. This would then filter into the rest of my day my mood would be hard to snap out of.

When you have chronic illness, you spend much of your time feeling like a sick person. Using myself as an example, I see the following: 2 rheumatologists, physio, cardiology, psychotherapy , respiratory, monthly blood tests, GP and when necessary A&E. That’s a lot of waiting rooms and a lot of time to think.

I don’t want to ever become my illness. It’s scary because sometimes I look at old pictures and I don’t remember that girl. It’s can seem that your life is governed by your health, taking about and worrying about your health. For this reason, distractions are great and they are very important. Spend time reading, writing, meditating, being creative, daydreaming….whatever it is that takes you out of a negative mindset. Think of it as part of you managing your condition.
May I suggest a classic Disney film? The ultimate in escapism and hyperreality!

Til next time,
X

http://www.sickoflupus.co.uk

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The Lupus Awareness Month Diaries: Day 13

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Good eve,

Today I was up early for an appointment at The Mineral Hospital in Bath. I was seeing the Physiotherapy team to talk about my more recent diagnosis of Fibromyalgia. It was a really helpful appointment though I was struggling with a migraine and a very fatigued body. Like Lupus, Fibro is very hard to diagnose because there isn’t a specific test. However, today I was formally diagnosed with severe Fibromyalgia. (The Physiotherapist was the third medical professional to confirm the diagnosis.)

The NHS website says; “Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body. The exact cause of fibromyalgia is unknown, but it’s thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.”

The symptoms also overlap with the most common Lupus symptoms; muscle pain and stiffness, fatigue, cognitive problems, headaches and insomnia. I’m still trying to process the thought that I have this secondary illness that almost mirrors most of what I deal with already.

I was relieved to learn that it isn’t a degenerative disease, Fibro won’t damage my organs but the pain will be something I will have to live with forever. I also talked about my inability to sleep. I rarely fall into a deep, restorative sleep and this is impacting my immune system, metabolism, hormone levels, tissue repair etc etc. I never realised just how important sleep is and exactly what happens when you experience deep, uninterrupted sleep. We agreed that it would be useful to take part in the Fibromyalgia coping skills programme to learn more about the condition.

A lot of the time, I see hospital appointments as something I have to do as part of managing my illness. Today was one of those appointments where I shifted my perspective and left feeling educated and actually fairly positive. I’m looking to be as proactive as I can in dealing with fibro. Ofcourse I feel sad about the confirmation that something else is wrong with me but I want to do all that I can to help myself. I.e, exercise, sleep, nutrition, rest etc.

The Physiotherapist picked up on the fact that I’m overwhelmed with life at the moment and has suggested continued psychotherapy alongside the Fibro coping skills programme. He also told me to be kind to myself. I guess he must see a lot of patients that feel they aren’t good enough due to circumstances they have no control over. It’s easy to become frustrated with life when you see your illness as the biggest barrier to happiness and success. I really appreciated hearing this from a stranger. I’m definitely guilty of being a self deprecating person but I’m working on it. One thing at a time!

Til next time X

http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 12

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Hi you, welcome back!

Have you read yesterday’s post? The blog spoke about invisible illnesses and the issues that arise when you look fine but feel awful. I feel like I’ve been acting all weekend and I’m exhausted! however, in my best Carrie Bradshaw voice, I couldn’t help but wonder just how many of us are doing the same thing on daily basis. It doesn’t have to be a health-related issue either. Because I know how it feels to constantly feel one way but act another, I guess I have a slightly different perspective and so I’ve started to think about things like this. I also got to thinking about how my life might change if I (along with everyone else) dropped the phony, watered down script when answering the question, ‘how are you feeling?’

Before Lupus, when pain wasn’t part of my everyday existence, if I had a headache, felt sick, whatever the issue was, I’d have no problem telling anyone who’d listen. I’d get a sick note excusing me from P.E. and felt I had every right to because I wasn’t well enough. As I got older, I’d do the same thing and call in sick for work – no guilt whatsoever. I’d take the sympathy and to be happy let my mum do everything for me, after all, I was too poorly to do it myself.

Why then do I/we downplay the truth when things are really tough? Saying, ‘I’m fine’ or ‘not too bad’ isn’t going to change the situation but I spend most of my life saying this. I feel immense guilt about the emotional stress my condition puts on my friends and family. Though none has ever so much as hinted that I’m a burden, I just feel this way sometimes. Again, it probably has something to do with the invisible illness thing. I may have decided to wear red lipstick today, it doesn’t mean that I can walk for more than 10 minutes before wanting to collapse.

I guess I keep the truth to myself so that people see less of the ‘sick person’ and more of the person they think they know. I also don’t want to be seen as a miserable cow that complains about everything!

Writing these blogs are quite therapeutic for me because I can write the words I’ve been unable to say. I do think its important to be honest with the people in my life that love and care for me, but for now, I don’t see myself being 100% honest 100% of the time. I’ll continue to share on a need to know basis as I find a better way of being able to share the more difficult aspects of my situation.

Til next time,
X

http://www.sickoflupus.co.uk