Unpredictability

'She felt very young; at the same time unspeakably aged'

 - Virginia Woolf

There is a split second as I transition from being sleep to waking up where I can usually tell what my day is going to be like. 

Same days as soon as I open my eyes I am overcome by pain. 

Those are the days I long to slip back to sleep to escape again. 

Other days I wake up and my first thought is 'thank you body'. 

These are the days when I do not have to automatically reach over to my bottle of codeine;
a day where I have a little more room to breathe;
where I may be productive.

Everyday in that split second I am welcomed by pain it just depends to what degree.

You learn to adapt but you never truly get used to it. 

There are days when I wake up and in that split second before I am fully present in my body 

I can forget about the pain.

 Blissfully unaware of what I am going to face. 

It is heavenly and cruel at the same time.

 It's like a tiny glimpse of being in a healthy body then suddenly it is whisked away 

in a matter of second. 

In my dreams I run, I have endless energy, I feel no pain, 

I am free and then I wake up 

and find myself in a cruel nightmare that I cannot wake up from.

If I had to describe my health at the moment I would use the word 'unpredictable'. One day I struggle; the next I have more energy; the next my pain is really severe; the next I start to feel like my old self again and then I am bed ridden again and all that can happen in one day. It's an exhausting place to be mentally to say the least. I don't know when I open my eyes what I am going to face and things can change within a matter of minutes which leaves me feeling really unsettled and anxious.

Three weeks ago I had an AMAZING week for the first time since I got this nasty infection. I was able to go to work three days! I thought finally I might be seeing a light at the end of the tunnel! Everyone noticed a difference in me but I was cautiously optimistic; I didn't want to jinx myself. Bring on Monday and another working week and I wake up to severe pain that made me physically sick and just like that I was brought down back to earth with a thud! I lay in bed begging the morphine to kick in and take away some of my pain. I switched back to survival mode and became quite despondent. Why? Why let me feel better then put me back here so quickly? Then by Friday I was starting to feel a lot better...see what I mean now!

To my amazement last week I was able to work my full 12 hours! Twelve glorious hours of feeling purposeful and fulfilled. For once my body was playing the game. I was so proud of myself because I knew how hard I worked to get there. If you know me by now and the nature of my illness there is always a but...by the weekend it became clear that my body had been pushed to it's limits and was not impressed with me. The weekend was spent sleeping, resting, recovering in an attempt to gain some sort of wellness for Monday. Monday came and I gave myself a little pep talk ' you can do this!' On went my brave faced as I endeavoured to hide my pain and discomfort. I struggled to focus...a mix of overwhelming pain and fogginess from the pain killers clouded my brain. I am there in person but my mind is else where. I am consumed by the battle being fought in my body. I sit there and day dream about what it must be like not be to in pain...I want to scream do you know how lucky you are that you have a body that isn't attacking itself? I ache with jealously as everyone walks around so effortlessly...do they treasure those precious steps? As fate has it as soon as I write that sentence a group of women run past my dining room window...thanks world!

I 'survived' at work until lunchtime and by the time I got into my car I burst into tears; tears of pain, frustration and tears of sadness. Everything just became hard again. Pain gets stronger, I feel weaker! I came home took some pain medication and sank into my bed. The last few days not a lot has changed. My pain is still flaring and my soul is exhausted. I am longing for those good days to come back or at the moment i'll take a little less pain,..pretty please.

I've had a few specialist appointments lately. I saw my Rheumatologist and we've hit a bit of a bump in the road again with treatment plans and what to do. My case is complicated as over the years I have reacted or found no relief from many medications. The hard thing with Lupus is that medications prescribed are used in other conditions such as Rheumatoid Arthritis,Cancer and in organ transplant patients to prevent rejection. So this leaves us in a trial and error situation. It is daunting looking at my long list of failed medications. The only medication that has ever really helped is Prednisone..again which is far from ideal. We discuss the possibility of a medication called Rituxan as a future possibility. It would not be an easy medication to get at this stage but when the time comes we will cross that bridge. We decided that for now to leave this medication as our 'safety net' which for me is reassuring to know we have an option when the time comes. For now I wanted a rest away from these nasty medication and their frightening side effects. I am so tired of putting these toxic drugs in my body when there is no way to guarantee they will help me anyway. We talked about my extreme fatigue and he stated how that is the hardest symptom to treat. There is no medication to magically take away the fatigue. So like many things I just have to ride it out....He did introduce a new medication called Nortriptyline which I take at night to help me sleep and help with my pain. It does seem to be working a treat so I am thankful for that.

Next on the list was an appointment with my Ophthalmologist to check my eyes. I had begin to notice my eyes felt cloudy and reading was becoming more difficult. As Plaquenil has given me early stage retinal toxicity I immediately made an appointment to see him. Of course this has resulted in more tests being ordered so we can hopefully identify the culprit...I am hoping I just need my prescription in my glasses changed and no further damage has occurred.

Finally I had an appointment with the Oral Surgeon to see about getting a new retainer made for my jaw. I am finding due to my high pain levels lately my jaw has decided to pop in and join the pain party. We think majority of the pain is coming from me clenching my jaw as a result of the pain and grinding my teeth at night. Yet another appointment was made to come back in and get my impressions made for my splint.

Then to wrap it all up I had a letter from my GP asking me to go to MedLab to get bloods taken so she can just check my levels again. I texted Dan from MedLab saying 'I feel like looking after my health is a full time job!'. The more I think about it the more it is true. Living with a chronic illness IS a full time job. Except for the very obvious difference that you don't get paid, you don't get time off, there is no holiday leave and you cant just hand in your resignation when you have had enough. Twenty four hours a day, seven days a week, 23 years living with Lupus has been my full time job.

I always want to bring you a cheery, happy blog post as recently they have understandably been difficult reads. I know it breaks my family and friends hearts to read about this pain and a big part of me feels guilty for that. I just feel that there is healing in me being able to write down my experiences. I struggle to talk about this pain to people...my automatic response is usually 'I'm okay'. I can't sugar coat this though the reality is living with this illness is hard, emotional and raw. I've said it before and I feel like I need to say it again. I don't want you to feel sorry for me or pity me. I strive so hard every day not to let Lupus rule my life. Maybe if anything I just want you to really treasure your gifts you have and don't take a single step for granted. I just want to thank you all from the bottom on my heart for all your kind and support comments. These are the little gems that I hold on to when things are tough.

I guess the beauty is that there is always still hope; hope that tomorrow I will wake up and the pain will be less; hope that this flare will burn itself out quickly; and hope that soon things will be looking up again. That's the nature of this illness you never know what is going to happen. I am extremely thankful that I have had some good days though. It is encouraging that my body still does remember how to have them. For once I am going to be greedy and ask for some more!

 I've got a beautiful life that I want to fulfill and live preferably without this pain!

Rebuilding

'I know this transition is painful,

but you're not falling apart; 

you're just falling into something different,

with a new capacity to be beautiful.'

William C Hannan

Do you remember the game Jenga you played as a child? The one with the wooden blocks that get stacked upon each other and the goal is to pull out a block without collapsing the entire tower. The tower starts out strong, solid and centered but as the game progresses the tower becomes unsteady, unstable and ultimately unable to stand on its own.

 I feel like my life currently resembles this game.

I have felt my tower collapse multiple times.   I have sat on the floor helplessly wondering how I am going to pick up the pieces yet again. I have been that little five year old who cries that its not fair that their tower collapsed. That I wasn't ready and that I want another turn! I have held my breath as a piece of me is removed and my whole equilibrium shakes.

Will I hold it together or will I break and crumble?

Pain has been stacked upon pain, fatigue built upon fatigue. Sleepless nights, painkillers, limitations, frustrations make for a very unsteady tower. I open my eyes and wonder will my tower hold today, can I handle another pain filled day? Please just hold a little longer.

My tower collapsed over the last months, I have stared at my broken blocks on the floor and know that now is the time that I must rebuild. I must move forward. I can do this, I have done this many times before.

One block at a time, one breath at a time, one step at a time.

Rebuilding is scary...and confusing. How do I make the pieces fit back together? Should they fit back together? Do I need a new plan to ensure my tower has steady ground?

This rebuilding stage took a turn I wasn't quite prepared for. It was a tower that I had dreamed of but wasn't quite sure on how to build. I was offered a job...! Twelve hours a week; Monday, Wednesday and Friday from 9am-1pm. A job as a care and protection social worker at a wonderful agency where I completed my third year placement. I was to start the next week! Just like that everything changed.

                                                 

I began placing my blocks on a steady foundation of rest, early nights, self care, medication and ensuring I was surrounded by my solid support system. We all knew this would be a challenge and it still is every single day but I knew I needed to try. Prayers, good thoughts and positive vibes were sent out that I would be able to cope.

It has felt amazing having a purpose away from my illness again. To be able to use all my years of hard study and apply them to practice. On the flip side it has been challenging. I have struggled with the fact that my mind goes 100 miles an hour and is so able but my poor body functions probably well under 50% currently. I get frustrated with myself (which I know is not helpful) when I cannot do what I need to. I will admit that currently every last bit of my strength is going into work and then I am left with not much else. My days off are spent sleeping and recovering...or attempting to.

I am telling myself I am rebuilding. We all must start somewhere and I am confident my body will adjust to this new routine. There is such a fine line between gently pushing my body and completely overdoing it. I need to be aware of this and focus on what I CAN do as opposed to what I cannot.

I saw my rheumatologist here last week and we have decided that it was time to start Methotrexate injections with the aim of me being able to lower my Prednisone (next blog post will talk about this more).

On Thursday I had a dull throbbing headache which I put down to over doing it. I awoke on Friday with it still there but went into work as I had a meeting. I get into work and was checking my emails when all of a sudden my eyes went all blurry and fuzzy. Then my head started pounding like nothing I had experienced before. I'll spare you the details but a stomach upset was then added into the mix. Cue Migraine time!! I found a quiet retreat in the play room on the couch where I curled up to close my eyes and hope that I still might be okay. No such luck. I was driven home where I spent the remainder of the day in my dark room with a flannel on my forehead. Surely sleep would make it go away....by the evening I was still feeling unwell but the pain had eased a bit. I woke up the next morning feeling a little better. I thought it was over....only for it to kick in again with full force. Light and sounds were excruciating and my brain felt like it was throbbing in time with my heart beat. Another alarm bell went of when I was unable to hold down my medications.

Dan called Mum who immediately came down and took me to the emergency doctors. Leaving my dark room was extremely distressing as every move my brain felt like it might explode. I turned up at the doctors in a far from glamorous state. Mum wrapped around my arm, cold flannel to my face and a bowl under my other arm. Thankfully I was taken to a dark quiet room after mum asked the receptionist to turn down the radio.Waiting rooms are not migraine friendly.

I quivered on the bed willing the doctor to hurry up to give me something to help with the pain. After about an hours wait I was seen by the nurse and then the doctor. I muttered a few words and thankfully mum did the rest. I was prescribed an injection which went into my hip (I have no idea what it was!). Mum was told she had half an hour to get me home and then I would probably sleep for four hours. I remember coming home then I was out cold. Sleep was a heavenly escape. Once I woke up I managed some dinner then was back in bed by 8.30pm and slept soundly until 9.30am.

Yesterday I was left feeling very washed out. I felt weak and achy and just generally not myself. I still needed heavy painkillers and because I wasn't able to keep my medication down the day before my body was very sore. There was lots of sleeping and resting and trying to get comfortable. I was still light and sound sensitive. Just to add to the mix I had to inject myself with Methotrexate which I think was the easiest thing I had done all weekend then it was another early night...

Today I reluctantly stayed home from work to begin to rebuild my tower with rest, sleep, warm showers, warm cups of tea and time to allow my body to heal. If I had pushed to go to work today I would have added pain, fatigue and frustration to my already unsteady tower. My head is feeling a lot better and the light sensitivity is now gone. I am just left feeling physically and mentally drained.

What it all essentially comes down to is balance. Will this move make me stronger or will it throw me off balance.

The game continues......but for now it is time to rest this weary head.

I will continues to rebuild one block at a time.

Overachieving body

“ As long as you are breathing there is more right with you than wrong

no matter how ill or hopeless you may feel.” (Kabat-Zinn)

The unfortunate fact of living with a chronic illness is that from time to time you will get 'normal person sick'. Of course my body seems to strive to out do itself and wont be happy with just the flu it needs added complications on top of it!

For the last three weeks now I have been battling a nasty virus that has invaded our family.When my family gets sick its a tiny insight for them into my world; the extreme exhaustion, body aches, headaches, nausea etc but the reality for them is they will get better. A tiny part of me feels slightly envious that after a week or two they will bounce back and life will continue on. Don't get me wrong I would NEVER wish illness upon my family but it does highlight for me how different my life is. Sickness is my normal!

The dreaded tickle in my throat turned into pounding headaches, blocked nose, sore ears, hot and cold sweats, body aches and a horrible cough. For two weeks this battle went on inside my body. Finally I thought my body had cleared it and I was free however things changed early this week.

On Monday I awoke unable to hear out of one ear. Great ear infection I thought! I struggled through the day with a lot of "pardons" and frustrated tears but mainly I hoped to avoid having to go to the doctors. That night I awoke at 3am with an unusual tightness and pain in my lungs. On a positive note my ear did feel better though! I managed to fall back  asleep and the realization kicked in that this was no longer something my body could battle by itself. A trip to the doctors was my next move!

 My doctor took one look at me and asked what was going on? I really feel for her as I am one complicated case. I explained how I was 'normal person sick' but its advanced into something else. No surprise my ear that was sore was filled with fluid but it was my chest that was more of a worry. Wheezing, rattling and spasming as I attempted to breathe in and out. Now normally my doctor would have put me on a nebuliser to open up my airways however due to me being on beta blockers and having trouble with a high heart rate it would have caused more problems. Instead she decided to try me on an inhaler and get the nurse to watch me and make sure my heart was okay. Thankfully my heart decided to behave itself and I tolerated the inhaler. I felt I could breathe a bit easier but my chest still sounded awful. So I was loaded up with an inhaler and spacer to take home as well as a increase of my steroids to 20mg to fight the inflammation.

It is now Friday and I am still feeling miserable. I struggled through last night with terrible wheezing but thankfully my inhalers offers some relief. At times it feels like I am breathing through a straw and cant get enough oxygen in which is an unsettling feeling. I feel for my poor body but I have to keep reminding myself it is doing its best and it is not purposely punishing me. Its fighting so hard so my job is to give it as much rest, fluids, medicine and love as it needs. Things will get better but for now its one wheezy breath at a time.