Dealing with trials of drugs and treatment options – Lyrica

Over the last week or so I’ve been really struggling with the brain fog and fatigue. My doctor and I are trialing an increase in my Lyrica doses and so far I’ve seen little to no improvement in the pain levels (the reason for the Lyrica) and a massive increase in the brain fog/fatigue department.

 

Retrieved from Facebook

I feel almost like I’ve taken a 6 month leap backwards in my mental capabilities!

It’s really hard to explain what it’s like to be on this sort of drug. My mother-in-law told me about someone in her support group who recently started Lyrica and I really liked her description… you can start off feeling fine, almost good, so you go about your day as normal but at some point you realise that you feel as if you’re high on drugs, you are completely out of it and unable to do anything properly… thanks to the fog I don’t think I’ve written that quite right but you get the gist of what was being explained.

Each and every day, multiple times a day, I’m stopping and asking myself what I’m doing. I feel like most days lately are just going by without me achieving much, like it was when I first fell ill.

Admittedly I am achieving more than I was back then, physically at least. I’m managing to keep up my (mostly) daily yoga, 3 times a week body weight exercises and daily walk or ride (which I’ve managed to increase to around 20 minutes a day).

Mentally though, I’m getting nowhere!

I have a uni assignment due next week and the fog is making it difficult to even understand what I’m reading in the weekly work, let alone managing to create my own 6 lesson unit of work on history for primary students. Luckily, my sister is over from Hong Kong at the moment and she’s studying similar subjects so I’ve had her helping me at least lay out the lessons so that it should be easy for me over the next week or so to get it into a structure suitable for uni. To be honest I’ve realised I’m not quite ready for study with deadlines yet, so when I finish this unit (hopefully passing) I’m just going to focus on the Certificate IV in Training and Assessment and not continue my degree for a little while.

Not being able to complete my uni work makes me question how ready I am to return to work. Although I’m fighting for a part time return to work soon, maybe I’m not ready. If this fog is not just the drug again, maybe I need to take longer to heal.

Every day I will be asking myself this:

From the last campaign I ran before getting ill in 2013.

My response is not always yes. Although I’d like it to be yes everyday, there a days where I’m struggling to even remember the order of my morning routine. On those days I feel like I’m travelling nowhere or maybe even backwards.

I know I can travel well, even with my illness, I just need to remind myself of my priorities and focus on those. I can be happy and fulfilled even with a life of pain and fog where most of my time is spent at home.

Next week when I see my doctor again I will need to have made a decision, is the fog/fatigue worth the minimal pain reduction the Lyrica is providing?

Right now my answer is NO.

If things have not improved by next week I will be asking to be taken off the Lyrica and, given that then I will be off all pharmaceutical drugs (except the Depo Provera for the Pelvic Congestion Syndrome), I will be looking more into natural and non-drug options for pain and energy management.

For me to feel comfortable returning to work, I need to be at a level where I can function – both physically and mentally – at a minimum of half of what my ability was before falling ill. At the 50% point I’d be comfortable with part time work which would hopefully assist in increasing that percentage for the mental functionality.

I’m beginning to feel like I’m rambling so I’m going to end this post here.

My questions to you today are:

Are you travelling well? Have you found that good point/balance point in your life?

If you ever tried Lyrica, what were your experiences with it?

Do you have any alternative treatment recommendations for pain and energy management?

Thank you for reading this post and don’t forget, you can head over to LiveKen to follow our journey to a simple, sustainable and meaningful life. I would love to share this journey with you as I’m sharing the journey with Chronic Illness here.

Being grateful of the small things

Throughout the last 15 months I have learnt a lot about myself and about the world around me. Thanks to my chronic illnesses my life slowed down incredibly quickly at that point and this has given me the time to discover more about me and the simple, small things that can make a difference in your life and change a horrible day into an OK, or even a good or excellent, day.

I believe the fact that I have been able to really focus on the small things going on around me as a result of, or despite of, my limited capabilities has been part of the reason I’ve been able to avoid clinical depression on top of my other illnesses.

Each day I am able to identify and be grateful for at least one small thing that feels like a miracle, looks astonishingly beautiful, or is incredibly helpful in some tiny way. For example, over the last few weekends we’ve had quite a few clear days. On one of these days I was commenting how it was a great day because the sun was out and shining. My husband was saying it was a bad day because it was so cold. It’s all a matter of perception and what you focus on as to whether you have a good or a bad day.

This past weekend, we were out weeding the front garden. Thanks to the rain the soil was loose and most the weeds were coming out easily which meant I was able to help for a little while without wearing myself out completely. The last section of the garden we were weeding was getting overgrown with small tufts of grass. These were annoying to pull out, and we were both feeling a bit over it at that stage. While pulling out the tufts of grass though I began to find these beautiful skeleton leaves. This reinvigorated me to keep going so that I could find more. They looked like little dragonfly wings and seemed magical to me.

One of the magical leaf skeletons I was finding while weeding on the weekend.

I feel that these two situations are great reminders to be aware and grateful of the small things happening around you. This is one of the steps of maintaining a positive attitude in the face of adversity.

As I write this post I’m again grateful of the sunny weather, I’m sitting in the back garden soaking up the sun before going on with my day.

What small things are you grateful for today?

Do you have any other tips for maintaining a positive attitude when facing adversity?

Don’t forget to head over to the LiveKen site to read my most recent post. There will be a post here every Tuesday and on LiveKen every Thursday.

Finding balance in the ever-changing landscape of chronic illness

Once again I have fallen behind on my schedule for posting here. As my health has improved (ever so slightly) I’m again trying to find balance between actually doing things physically and mentally, and resting.

Over the last few weeks I have had quite a lot of very busy days (for me at least) mixed with a few days of having no energy to do anything at all. The number of crash days – days where I have no energy at all – do seem to be getting less each month according to my records, but I still haven’t hit the right balance and I’m still struggling to do a full day of anything really.

I have decided that in order to do more physical activity I’m going to have to cut back on my online activities for the next few months at least, as such I will be aiming for only one post here and one post over at LiveKen each week (only every second or so post on LiveKen will be written by me, though I am acting as editor for all other posts).

What physical activity am I wanting to increase?

• Spending more time with family and friends – I’d like to spend at least one day a week actually out doing something with the people I care about. In the past few weeks I have managed dinner at a friends house, a trip to our local open range zoo with my sister and younger cousin, and tomorrow my sister is taking me and my mum out for a winery tour.
• Housework – I’m slowly working up to be able to keep on top of this myself. Through de-cluttering and setting up routines I’m hoping to be able to maintain the house at a level that we only need the cleaners in once a month to keep on top of it.
• Exercise – I’m still trying to build up my exercise levels. The housework has helped a lot with that, but I’d also like to be able to walk or ride my bike a lot more than I’m currently able to.

Other offline activities I would like to increase:

• Drawing – I feel like although I always want to get more of the drawing done for the Foggy Frog picture book, I’m not always managing to fit in any during the week. My aim is to do two of the hand-drawn pictures a week until they are done and then work out the next steps for colouring them.
• Study – I have an assignment due in 4 weeks for my uni course, and have not made much progress on the Training and Assessment Certificate so I’m going to be prioritising these for the next month or two when my brain is functioning. I can still only manage maybe 1-2 hours a day actually focusing and being productive in any mentally challenging activities.
• Business Planning – I have begun working with a business advisor to work out the best way to promote the picture book and build on it with the LiveKen brand. I would like to allocate some more time to this.

Overall, I am trying to find a better balance between my online and offline life so that I’ll be better able to work towards returning to work as soon as possible. As I do this I do have to keep in mind that this illness has a mind of its own. I’m trying my hardest not to get my hopes and expectations up too high, but at the same time trying to challenge myself and not resign myself to where I’m at now.

This balancing act is a difficult one for anyone to achieve well, even without a chronic illness, so I will try to remember that rest is still my first and foremost priority and that I need to be gentle on myself. No matter how frustrating it may be my health must come first.

Have you found balance in your life?

What is or isn’t working for you?

Defining the Best ME: A 6 month update

At the beginning of the year I shared with you my aspirations for 2014 to define the best me (my equivalent to a New Years Resolution).

As we’ve reached (or actually crossed) the half way point for the year I thought I’d take a moment to share with you my progress with these aspirations.

Although I didn’t have set goals, I had three key areas of my life I was going to focus on:

• Mental
• Physical
• Spiritual/Emotional/Wisdom

For the first few months my 3 weekly posts focused in on each of these topics through Mental Mondays, Wisdom Wednesdays, and Physical Fridays. Although I’ve stopped dividing my posts up into these categories I’m still considering these areas in my day to day and long term planning.

So, where have I gotten to so far in Defining the Best Me?

Mental

I started the year off without any clear idea of where I was heading with my mental activities. My job, before becoming ill, provided lots of mental stimulation as did the study I was doing at the same time. Since becoming ill though I hadn’t even read a book, let alone done anything that required strenuous thinking.

My Mental Activity end of June 2014

• I began the Foggy Frog Campaign and ran a Kickstarter Campaign to raise the funds necessary to publish the picture book ‘Foggy Frog and the Pain Gang’. This was a brand new experience for me and used a lot of my mental capacity at the time of the campaign. I’m still working towards delivering the picture book and I’m now almost half way through the basic hand-drawn pictures that are forming the basis of the illustrations for the book (another new experience!).
• I have begun reading daily again. I got new glasses which allowed me to read more than a few sentences without my eyes going blurry. I’m reading some fiction but mainly books on building a business, being the best I can be personally and professionally, environmental and sustainable activities, and simple living.
• I’ve started working on a business model around the Foggy Frog campaign. LiveKen has been developed as a face for all our information, education and empowerment work assisting individuals to live simple, sustainable, meaningful lives with or without chronic illness.
• I’ve started studying again. I’m working on one unit towards my Bachelor of Education (Primary), although I’m having to assess whether I’m going to be able to complete this degree due to my health issues and the university not being flexible about delivery of the practical units. I’m working towards a Certificate IV in Training and Assessment. I’m participating in a few short courses around starting my own business and illustrating the picture book.
• I’ve joined a writers group. I went to my first meeting last night. I really enjoyed it and will attend again, although I think I’ll need to leave early as I’m struggling today mainly due to how late the course went. It’s a group where we read and critique each others writing and participate in writing challenges each month.

Physical

At the beginning of the year I wasn’t really doing much at all in terms of physical exercises or activities around the house. When I did do anything I found that I was paying for it for days or even weeks afterwards with increased symptoms.

My Physical Activity by end of June 2014

• I’m walking or riding daily. Either a 15 minute walk or a 4 minute ride on my stationary bike every day.
• I can do around 10 minutes of Yoga daily. Just basic stretches, it forms part of my morning routine along with feeding the fish, changing the cats’ litter tray and meditation.
• 3 days a week I include some body weight exercises from the Exercise Physiologist. Although I had built up to doing 2 sets of these on the days I was doing them, I’ve had to cut back in the last month due to increased symptoms and extreme fatigue (I think this may be partly due to winter and partly due to an increase in my incidental daily activity levels).
• I’m doing some cleaning every day. I started with a small amount of dishes every day and a load of washing twice a week, now I’m adding some sweeping every day (how much depends on my energy levels).
• I try to get out of the house at least every 2nd day. This may be just going to sit in the park up the road. Once a week it’s a trip to town for appointments followed by some time at my mum’s house.

Spiritual/Emotional/Wisdom

This is an area that I’ve found to be more and more important to me as I move through this journey. I have done a lot of reading around this area and have incorporated many new skills in my daily life.

My Spiritual Activity by end of June 2014

• I meditate daily. At least once a day (in the mornings), and some days many more times, I sit with my eyes closed and just focus on my breath or on the sensations in my body.
• Mindfulness. I try to incorporate mindfulness into everything I do. For every activity I’m doing I try to be single-minded and focused on that one task for a set time and then take a break. While doing an activity, I’m attempting to be mindful of my thoughts, urges, and the messages my body tries to send me.
• Simplify. This is key to where I am now in my journey. I’m doing everything I can to simplify my life, simplify my possessions, and identify exactly what is important to me. I will be sharing my journey through this process mainly over on the LiveKen blog but occasionally I’ll write about it here as well.

Defining the Best Me

I’ve listed a lot of things that have changed over the last 6 months above in each of the categories I’ve been focusing on but I haven’t yet stated what this all means in terms of defining the best me I can be. That’s mainly because I’m still experimenting and exploring.

I can say that the best me, with or without my chronic illnesses, is someone who lives true to her values. I’ve shared my thoughts on values before and will share more in the future but I believe my core values are:

• Community is essential (Family and Friends, and the wider community)
• Simple and Sustainable
• Mindful and Meaningful
• Authentic, Genuine and Respectful

As you’ll probably notice, these values also line up with the LiveKen values as well.

How are you going with your New Year resolutions or aspirations?

Have you been working on defining who you are this year as well?

Simplifying Life: Setting a budget

On and off throughout my life I’ve played around with different ways of monitoring and managing my financial situation. For most (if not all of my adult life) that situation has not just included me, but my husband as well.

This complicates things in some ways because we come from very different backgrounds. His family life was secure and his parents have always (as far as I’m aware) been financially secure, buying their own house early on and worked with a financial adviser to ensure they could retire early. He was always able to get what he needed plus more, and went on many family holiday overseas and interstate. On the other hand, my parents are separated and both had very little money and are still working as they don’t have much (if any super saved). We lived off hand-me-downs from cousins and family friends, and had to do without quite a lot.

We have very different values when it comes to money and what it means for us. To E, having a certain level of income is security and without that security there it is ‘impossible’ to consider planning any major expenses in the future. To me, money isn’t everything. I would prefer to have less money but greater health, family and community connection, and consider saving money even when it feels like there’s nothing to save.

Since I’ve been ill we’ve been living off one income and given that I’m not contributing financially I asked E if I could develop a budget for us. The problems I’ve found is that I would like to budget extra money towards having some savings and paying off our mortgage quicker (and I mean actually plan to save), as well as budget money for specific activities I know is going to cost us money. On the other hand, E sees this budget as a way of seeing what our essentials are and then he’d like the rest of the money to just be a ‘pool’ we can dip into for other expenses and use for whatever we like.

At this point I’ve put that conversation on hold. Certain things I’ve specifically added to the budget and others I’ve left out.

Why set a budget and stick to it?

Part of simplifying my life is simplifying levels of stress. On multiple occasions we’ve had to make decisions on whether to buy certain things because they were at a good price. These things are usually things we probably didn’t really need. Without a budget I stress out and over-think all the options. With a budget in place I can say yes if I know it fits in the budget and we need it, if we don’t need it or it doesn’t fit within the budget I can easily say no without the guilt.

Another reason is to be able to actually see where our money is going. Things like buying lunch at work every day is costing almost $3,000 a year!

When we’re aware of where our money is going we can make informed choices about where we can cut back and save.

I love to see the numbers changing (either debt going down or savings rising). By having a budget I can track the change monthly or yearly and actually see how we are doing financially.

Budgeting 101

If you haven’t set up a budget before here are some simple tips to get you started:

1. Track your spending. If you don’t know where your money is going you can’t set up a budget. I suggest tracking your spending for a month before moving to the next step and continue to track for a few months after so you can average out your spending in each category.
2. Use a template. The idea of setting up a budget excited me but also almost overwhelmed me. I didn’t know where to start or what to include. I found a very easy it use annual budget spreadsheet (that breaks it down into months and automatically tracks the outcome) in my Excel templates. There are also templates online and I’m sure you can find one that suits your needs.
3. Complete the template and stick to it. Once you’ve written out you budget you’ll be able to see if you’re spending more than you’re earning and you’ll be able to identify areas you could cut back and set limits on. Decide on your approach to making sure you earn more than you spend and stick to it.
4. Review regularly. I’m going to try monthly and annual reviews and see how that goes. Others do weekly or even daily reviews

Do you spend time reviewing your finances and setting financial goals?

How do you track your budget?