Are you feeling better? You’re looking good!

The other day, E and I were out celebrating the birthday of one of our friends. It was a dinner and dessert event, which meant a late night for me.

Because I knew we were having a late night I’d spent most the day doing quiet activities like reading and building the Lego I got for my birthday. Even though these were the main activities I did that day by lunch time I was struggling to keep my eyes open and my pain levels were rising.

I spent most the afternoon on the couch resting and thankfully I was feeling reasonably well when it came time to head to dinner. Still low energy and slightly raised pain levels, but not bad enough that I couldn’t focus at all.

At dinner, the venue was quite loud and I did struggle with focusing on conversations so didn’t even bother trying to keep up with conversation at the far end of the table. I did chat a bit with those at my end of the table but mainly just tried to listen.

When we got to where we were having dessert it was quieter so I began to join in the discussion again. At this point someone asked me if I was doing better because I looked a lot better than I had before.

Now, I’m always hesitant to answer this question.

Yes, at the moment I’m managing to do a lot more than I had in the last 3 years. I’m working and I’m socialising more. My energy levels are (ever so slightly) better than they have been (more stable), meaning I’m crashing less often, and my pain levels are relatively stable (although they’re beginning to fluctuate a lot more now that winter is here again).

If I just compared how I’m doing right at this moment with how I was 6 months or 2 years ago my answer would be a resounding YES, I’m doing better.

But I’ve felt better before, for a month or two, and then had a major crash which took me back to worse than I was to start with so I don’t want to jump the gun and say I’m doing better yet.

I believe the Testosterone cream is helping with my energy levels at the moment, but I am concerned about the side effects if I stay on it long term and I really want to have children at some point.

E was frustrated with me that I wouldn’t give a clear Yes answer to our friends and that I deferred to him and asked if he thought I’ve been doing better.

I did this because, up until recently, he’s always been able to tell (even before me a lot of the time) if I’m doing too much and about to crash. It seems that I’ve been able to perfect my ‘well’ face (the one I use to cover the fact I’m struggling) to a point where even he’s not noticing as quickly when I’m struggling with things.

That night out, I looked like I was doing well. For some periods of time I was, my energy levels were fluctuating dramatically going from able to focus to complete zone out several times during the mean. Normally E would notice these zone out times, but it appears he didn’t that night…

Do you struggle with people assuming you’re better because you ‘look’ better than before?

How do you decide how much to share?

A week in my life with Chronic Illness

I meant to do this post last week for May 12 International Awareness Day but brain fog made me forget the date and I didn’t have the energy last week to write it anyway so here it is today…

A little background for those of you who haven’t been following me for very long. For over 3 years now I’ve been living with chronic pain and fatigue as my daily companion. I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Pelvic Congestion Syndrome.

I’ve already done a day in my life post, since then I have improved to the point that I try not to nap during the day any more.

What I do in a week

The following is what I did in the week starting Monday 9 May… It gives a good idea of what I do most weeks. The types of appointments and work I do varies week to week and the number of crash days also varies.

Monday

I wake up slowly at around 8:30 am noticing the heavy and aching feeling that’s always there. After stretching in bed and slowly getting up I measure the 0.5mL of testosterone cream and rub it into my leg and then slowly get dressed.

After getting dressed, I sit back on the bed and spend some time checking my emails and my to-do-list, and waiting for the heaviness and shakiness to settle enough to get up and make breakfast.

I’m feeling rather out of it today so I take my time doing my weekly budget review and spend some time online reading blogs. The fact that the weather is very wet and cold today doesn’t help my pain levels. I decide to hop in the bath and read until lunch time.

Being a Monday, it’s my day to do a bike ride. Before having lunch I decide to do a 10 minute easy ride on the stationary bike in the shed because it’s too wet to go out. I reheat leftovers and put the tv on while I eat lunch.

I’ve got some work I have to do today so I spend most the afternoon doing that. Again, tasks that would normally take half an hour to an hour to do are taking me over 3 hours.

Before long, it’s 5:00 pm and my brain is like mush, I put the TV back on and only get up to make a simple dinner and to do some stretches because my pelvic pain is flaring tonight.

At around 9:00 pm I get up, take my pills, have a shower and head to bed. In bed, I take some time to review my daily to-do-list and write a short list for tomorrow. Lights out by 10:00 pm.

Tuesday

I don’t wake up until 9:00 am today. Before even getting out of bed I decide to check my emails and my to-do-list because my body doesn’t want to cooperate.

Today I’m heading to my mum’s to help her with her assignment so after getting dressed and having breakfast I drive down there. Most of the day is spent helping mum. When we finish going through mum’s assignment in the afternoon, we go for a short walk and then I sit down and do my weekly blog posts before attending an online meeting for the conference I’m helping to organise.

By the time the meeting ends my sister has got home from her school placement and we head into town for dinner with E and a few friends from his office. Because E was drinking, I drive us home at the end of the night (that doesn’t happen very often).

It’s a late night out for me but I’m in bed by 10:30pm

Wednesday

Ok, so I did a bit too much Tuesday and that time of the month is starting so pain and fatigue are very high today.

It’s definitely a crash day which means I spend most the day in front of the tv not doing much. I do make myself do my 10 minute ride on the stationary bike because some movement helps with pain levels and I order a few things I need online (cat food and my calcium and magnesium supplements). I also prepare the dough for baking bread the next day.

I shower both in the morning and the night to help with pain. In bed by 9:00 pm.

Thursday

I’m awake at 9:00 am. Fatigue is slightly lower today and I do have a doctors appointment I need to go to. The day starts with a shower and breakfast. I also throw the bread in the oven to bake.

Before heading to my doctors appointment I throw on a load of washing. I drive to town and visit my doctor to get a script I forgot to ask for in my check up the week before. After that I buy lunch and eat with E in his office before I drive home and hang out the washing.

The rest of the day is spent resting in front of the tv, until I shower and head to bed again at around 10:00 pm.

Friday

Up at 8:30 am today and I do feel slightly better today. Dad’s over for lunch today so that takes up most my day.

I do manage to send an email out inviting people to a meeting next week for the conference organising stuff and to do a short ride on the stationary bike and a short walk with my sister who is over for dinner.

In bed by 10:15 pm.

Saturday

After getting up at 9:00 am I head down to mum’s and spend most the day out with my sister op-shopping. I know that I’m doing too much today but I’m enjoying a day out with T while I can.

some of the books I picked up on our op-shopping tour.

In the evening, E makes dinner because I don’t have any energy left and I’m in bed by 9:30 pm.

Sunday

Up at 9:00 am today and throw on a load of washing straight after breakfast. I then sit down and rest for a while before baking a cake. The whole morning is broken down between baking, washing, and doing low energy activities like reading blogs.

I reheat left overs for lunch and then read some of the children’s books I bought yesterday until E’s family comes over for afternoon tea.

I also spend some time prepping for baking bread on Monday and putting together some lego.

I have a bath in the evening after dinner as I’m feeling very achey and end up in bed late at 11:00 pm mainly because I relax too long in the bath.

That was my week last week.

As you can see, my days vary a lot. This was a fairly busy week for me as there were a few days in there where I wasn’t able to have any rest breaks throughout the day at all. That isn’t typical but the rest of it is. I try to find a way to balance work, social, exercise and rest each week.

What does your week look like?

Family Planning with Chronic Illness

A Quick No Buy Challenge Update: Although I was tempted by some of the clearance sales in town (hello fluffy warm down jacket) I did not make any purchases this week that weren’t experience related and shared with those that are important to me. I had lunch with my sister while she was in town (over from Hong Kong for a wedding) and E and I spent a wonderful morning out at the zoo for a behind the scenes tour and breakfast on Sunday.

And now for the post… (Apologies this is quite a long one for me!)

Those of you who know me in real life, and those who have been following my blog for quite a while, know that the ONE thing I really REALLY want from my life is to be a mum.

Unfortunately, around the time E and I were finally having serious discussions about potentially starting a family in the next year or two I had my first major crash.

Almost 3 years later and we’re just beginning to start having serious discussions again, but this time my health is the major road block.

Starting these conversations have been difficult this time around. E has not really wanted to talk about it because he feels like he has to be the bad guy saying No when he knows it’s something that I really want. He has wanted to wait until I was physically capable before we had the hard conversations but I think I’ve now made him realise that not talking about it has been hurting me more than having honest conversations.

Being a scientist at heart he really needs us to have logical and rational conversations about how this will all work and he struggles when I get overly emotional during the conversations.

So… where have we got to?

We have agreed that I need to set some goals to get to a point where I feel confident that I can physically cope with the pregnancy and the uncertainties that come with raising a child.

The goals I have set myself are as follows:

I believe that I would be physically capable of handling the stresses and uncertainties of pregnancy and raising a child if I can achieve the following and maintain it for at least 2-3 months with no major crashes/flare ups:

1. An average step count of around 7,000
2. The following average breakdown of activities
   • Less than 30% Rest/Mindless Activity – on average around 25% (meditation, naps, audiobooks, tv, Facebook, and travel when E is driving)
   • 10-25% Mental Activity (work, blogging, reading articles, etc)
   • around 50% Physical/Social Activity (exercise, housework, outings, etc)

To determine how I’m tracking for these goals I track my daily activity using a time tracking app on my phone and my steps using Garmin Connect and my watch.

As an example of where I am at the moment, my breakdown for February was:

• Average steps 5,404
• 39% Rest/Mindless
• 15% Mental
• 24% Physical
• 20% Social

I also break each category (mental, physical, and social into high and low activity). Overall my February breakdown for this was:

• 39% Rest/Mindless (as above)
• 26% high activity (exercise of any kind, work, budget review, large groups of people or stressful situations, cooking complex meals, baking, gardening, etc)
• 32% low activity (reading, writing in my journal, one on one or small group activities, showering and dressing, reheating leftovers/simple meals, etc)

*Note percentages may not add up to 100%. I am using the percentages provided by the app and I don’t believe it rounds decimals correctly to whole numbers.

As you can see, I’ve improved a fair bit since my crash in November (my average step count was down to 2,000-3,000)

The next step is to have discussions around the difficult questions like:

• What will happen if I’m having a crash?
• How will I cope with the day to day activities of looking after a newborn/toddler/older child?
• What kind of support do I need for this to be possible?
• Not only CAN I have a child but SHOULD I? Is it fair to the child?

What I’d like to do is get your input. If you have had children of your own while dealing with chronic illness like Fibromyalgia or ME/CFS, how did you cope?

Even if you don’t have a chronic illness, do you have any tips for minimising the impact of flares?

Here are my thoughts so far:

What will happen if I’m having a crash?

Flares and crashes are part of the parcel with many chronic illnesses so it’s important to have some sort of system in place for dealing with them. The first 5 years will be the most difficult to cope with as the child will be too young to actually understand what’s wrong when mummy needs to go lie down and isn’t able to do all the things they want to do.

Depending on the severity and duration of a crash/flare up there are several things that I can do to make sure I’m not neglecting my child during this time…

1. Be realistic about what is really essential to be a ‘good parent’. A young child doesn’t necessary understand what is going on but they are aware of if their parents are there for them or not. Realistically, the occasional day of ‘low energy activities’ is not going to be detrimental to my child’s health and mental well being as long as I’m with it enough to be there with them.
2. Have stand by ‘Low Energy Activities’ available. This could mean a day in bed reading stories, watching tv/movies, or listening to music. It could mean allowing my child to have free play time while I observe from the couch.
3. Have family support available on call if needed. At this point in time we are very lucky to have a large network of family support with reasonably flexible schedules. E’s Amma and Uppa, his parents, and my Gran are retired, my mum works part time, and my dad has a fairly flexible schedule. Obviously, they still have things that they do regularly and tend to fill up their schedules with other activities but between them all I’m fairly confident I could find someone at short notice who could help me out.
4. Do my best to minimise the chances of a crash/flare up occurring. Obviously prevention is better than treatment, so having systems in place to minimise the likelihood of a flare is important. The ideas I’ve come up with (or found while researching this topic) are:
   • With a new born, rest when ever the baby sleeps. During the first 4-8 weeks focus only on what is necessary – feeding, cleaning and resting with the baby. If possible, have support come in to do other tasks like cleaning, cooking, etc. (We already have a cleaner coming in once a fortnight, and – because I’m keen to use cloth for health and environmental reasons – I’d consider a nappy service for at least the first while).
   • As the child grows, continue to pace your activities. Consider having regular days/times where the child is in someone else’s care (family, child care) so that you can still have regular rest breaks.
   • Consider using a combination of breast and bottle feeding so that others can assist. This would be particularly useful for night feeds so that I can still get reasonable sleep. The impact of sleep deprivation on my health is one of our primary concerns at the moment.

How will I cope with the day to day activities of raising a…

Newborn?

From what I’ve read, the newborn stage (apart from the sleep deprivation) is relatively simple to cope with. As your baby is not yet mobile it is easy to do low energy activities with them. Most of your time would be spent just feeding, cleaning (nappy changes, etc) and cuddling your new little bundle.

As stated above, I’d consider having support services in place for cleaning, etc.

The verdict on breastfeeding vs bottle feeding for those with chronic illness is still out. Breastfeeding is simpler in that you don’t need to worry about sterilising bottles, making sure the formula is at the correct temperature, or just using up your energy in making up the formula. However, it uses much more energy to breastfeed and can leave you physically more tired (something that a person with chronic fatigue doesn’t really need) and you can’t share the task of feeding the baby.

Personally I’d still like to breastfeed, at least for the first few weeks if possible, but would be open to pumping and supplementing with formula so that E and others could help with feeds after the first few weeks.

To make breastfeeding (especially at night) as easy as possible in the beginning I would like my child to sleep next to me. However, due to my pain levels I tend to toss and turn at night and E is a very heavy sleeper so I wouldn’t want my child in the bed with us. I’d look at getting something like the arm’s reach co-sleeper which converts from a co-sleeper bassinet to a free-standing bassinet to a ‘read to me’ love seat. I’m interested in getting items that will have longevity in terms of usefulness and style.

As I mentioned above, my passion for sustainability and my own experience with disposable items near my nether regions (I’m allergic to disposable pads, etc) mean I’m keen to use cloth nappies on my child. I have done a lot of research on this topic and feel that it is doable even with limited energy and physical capabilities. With a young child you will already be increasing your washing requirements to keep their clothes clean, it doesn’t add that much to throw in a load of nappies every 2 days or so. It’s even easier if you use a nappy service that collects the dirty nappies once a week and washes and returns them.

Crawler/Toddler?

This in when I think things will start to get interesting. At this point in time I believe I’d be considering putting my child into some form of care (family members or child care) 1-2 days/half days a week so that I had some ability of pacing and having some more intensive rest.

I’d also consider going to spend days at other people’s houses (or have people over to visit) so that I have some support during the day.

Older Child?

As my child gets older I’d explain to them in age appropriate ways how my illness impacts our life and why I need rest periods.

Well, I’m starting to run out of steam and I have gone on for quite a while so I’ll leave it here for now (stay tuned for more as I continue to consider our options)…

Read More…

There are plenty of articles out there on this topic but here are just a few

Parents and Chronic Illness

10 Tips for Parents living with Chronic Disease

Caring for Your Child During a Chronic Illness Flare Up

Do you have any tips or advice you could share that would help us through this decision process?

Are there any other questions we should be asking ourselves?

 

Share Your World – Week 5

The questions this week have been very thought provoking and I’ve struggled with a few of them but here we go…

If you had a shelf for your three most special possessions (not including photos, electronic devices and things stored on them, people or animals), what would you put on it?

I don’t really focus much on ‘stuff’ and ‘possessions’ any more so I’ve struggled to think of 3 things that would go on the shelf.

I would definitely include my childhood teddy. He’s been through everything with me and he’s not going anywhere…

The second thing I’d put on it is the old cigar box that currently holds my yearly letters to E. Starting from our wedding day I’ve written a letter to him each year as part of his anniversary gift.

The third thing I’d add would be my special jewellery… My engagement ring (was my great grandmothers) and wedding ring, my heart necklace (6-month dating anniversary gift from E) and my crystal necklace (also a family heirloom).

If you had a box labelled ‘happiness’, what would you put in it?

NOTHING, or a note that just says ‘Be Present’. I would use it as a reminder that happiness comes from within, not from external sources.

What do you want more of in your life?

I’m very happy (or as happy as I can be) with my life at the moment but I’d be happy if I was able to have more family time and less pain/health issues.

Daily Life List: What do you do on an average day? Make a list of your usual activities you do each day.

An average day… I was planning to do a day in my life style post like my friend Joy and Toni Bernhard anyway so I guess I’ll describe it here.

Wake Up time… Generally between 8 and 9 am (although the last few days I’ve woken earlier then fallen back to sleep). At this time I take a moment to scan my body and see what parts are hurting the most and the least (there’s never no pain so it’s more an assessment of how well the day is going to start).

While still lying in bed I do at least a 5 minute meditation before stretching and slowly sitting up. Most days I’ll take a shower (sitting on the floor to avoid falling over or making pains worse) and get dressed.

Breakfast is the next task to address. I make a cup of tea and see how much energy I have. Most days I just have a piece of fruit or something premade that’s easy to eat. When I have the energy I’ll make a cooked breakfast with veggies and eggs.

While the kettles boiling (and breakfast is cooking) I’ll do a short sun salutation. Just 5 minutes is enough to stretch out my muscles but it also wears me out again.

After eating breakfast it’s time for another rest so I’ll sit on the couch drinking my tea. I may browse Facebook on my phone.

After 10-15 minutes rest, I’ll read through some blogs for up to 30 minutes (usually closer to 15 minutes) then push the button that sends the robot vacuum on a round of the kitchen/family room and laundry.

I’ll clean the litter trays and then assess how I’m feeling.

If it’s a good day I’ll do an hour or two of work (writing blogs, working on consulting jobs) or spend some time cleaning up around the house with regular short rest breaks in between. If it’s a bad day I’ll put the tv on or listen to an audio book.

At around 11:30 I’ll start thinking about lunch. Generally this will either be left overs or a sweet potato which I throw in the oven with salt, pepper and oil and leave to bake for an hour.

After lunch I have a nap before either doing a bit more work/housework or putting the tv/audiobook back on.

Around 5 I start considering dinner. I slowly make dinner taking lots of rests and by the time E is home (generally between 6 and 7pm) dinner is ready to eat.

We eat and watch tv until around 9-9:30 when I take my medicines, floss and brush my teeth, shower and bed.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful that I’m able to live a slow life. Over the weekend E and I were able to slow down and just relax. I spent a whole morning listening to audiobooks while E was on the computer and doing things around the house, we visited family and we went for a slow walk in the local national park.

This week I’m looking forward to continue living slowly. Taking the time to enjoy the simple things like the warmth of the sun and the sound of the rain. I’m also looking forward to afternoon tea with Rach as a special mid-challenge catch up as part of our 20 week no-buy challenge.

Week 7 No Buy Challenge: Celebrations, side effects and PEM

 

Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

• I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
• High levels of pain down the inside of my limbs (especially my left leg).
• Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?

And the weather changes again…

The weather here has been up and down with some extreme heat over the last few weeks. Unfortunately, this weather isn’t conducive to me being at my best.

I have been struggling a lot over the last week in particular with very high pain and fatigue levels. Keeping up with the daily blog posts and doing a minimal amount of other work or appointments takes most of my energy and the rest of the time has mainly been spent doing mindless screen activities (tablet games or tv).

My step count has dropped again to a minimum of 2,000 (half the minimum I’d built up to) but I’m not too concerned about that. The thing I’m most to concerned about is if this is a precursor to a crash like I had last year (which I haven’t fully recovered from even now).

I’m hoping by proactively resting and listening to my body I can avoid a major crash.

The problem is that I still don’t really know what caused the crash last year so I don’t know what I can do to avoid it.

On the other hand, I don’t want to go backwards because I’m being too cautious… so I am still trying to maintain a minimum level of activity and because it’s the newest and most meaningful addition to my routine, I’m trying to prioritise my work activities.

Now it’s time for another rest…

Do weather changes affect your health? What steps do you take to minimise the impact?

Life with Chronic Illness – Pacing and Routine revisited

Last week I discussed how pacing was one of the key recommendations from the International ME/CFS Primer for Clinical Practitioners. As has happened in the past I left my doctors appointment frustrated at the lack of understanding that medical practitioners here in Australia have about ME/CFS and treatment techniques.

When I brought up the topic of Pacing, it was clear that my definition and my GP’s definition were not the same, and I struggled with trying to explain what I meant by pacing.

To my GP (who has a background in Exercise Physiology/treatment), pacing means the same thing as Graded Exercise Therapy (GET). This means that he believes it isn’t about me pacing myself so much as me following what others (my exercise physiologist) tells me know matter how I’m feeling at the time. This technique works for those suffering from depression or other physical injuries, possibly even for Fibromyalgia, but it does not work that way in ME/CFS. Due to physiological differences, people who suffer from ME/CFS react differently to exercise and pushing when feeling bad can lead to crashes and irrevocable damage to their systems (not in all situations but it is possible).

The other thing that came up in my doctors appointment that makes me feel a little frustrated was that his idea of how I can tell when I most likely will be better was based on the time frames of the pacing/GET. Based on how often we’ve currently been increasing my exercise levels, it’s still going to be a few years before I’m anywhere near better (10% increases have been occurring every 2-3 months). This doesn’t help me with feeling like my life is actually moving forward. I feel like all my goals (in particular starting to try for a family) are just on hold and won’t be achievable at the current rate of recovery given that E believes (and to some extent I agree) that I need to be healthy again before we start trying and we’re not getting any younger.

Luckily my Exercise Physiologist at the University Clinic seems to be slightly more up to date with what treatments affect our system and has told me to do what I can when I can. If I can only do a little bit just do that and don’t push myself too far.

So, after pushing myself too far over the last few weeks, I’m back at the point of identifying my current base line so that I can re-initiate some form of pacing and routine in my daily life.

By having a better understanding of where I’m at I’ll feel more confident about saying ‘NO’ to things that are going to push me too far past my current limits and will feel slightly more in control of my life (to what extent I can be) – At the moment I feel like I’ve completely lost control and don’t really know where I’m heading.

As of last Friday, I’m once again paying close attention to what I’m doing, how my body is feeling and what I still have to do. I’ve given myself permission to take things extra slowly while I reestablish my base line and I will then (very slowly) build up from there. I am also trying to reestablish my morning, lunch and evening routines to help me stay on track.

What are my routines?

Morning Routine

• Up by 8 am (lately it’s been 8:30 – 9:30 before I’m out of bed)
• Journal
• Shower and dress
• Breakfast
• Sort animals (including sweeping floor)
• rest
• Yoga (and on Tuesday, Thursday and Saturday my Exercise Physiologist workout)
• meditation
• blog/read/write/draw (MENTAL ACTIVITY)

Lunch Routine

• lunch at 12-12:30pm
• walk or bike ride (I’ve been taking photos of the nature around us (see gallery below for some) – it’s been such nice weather lately)
• rest/meditation

Evening Routine

• All electronic devices off by 8:30pm (including TV, phone, computer)
• Bath/Shower
• Read
• Meditation

Although I feel extremely guilty about having 2 baths/showers a day I’ve found it’s an essential part of my pain management strategy. When I skip one of them my pain levels increase by quite a bit. To alleviate my guilt a little I am trying to bucket out bath water whenever I have the energy to do it so that the water is reused to water the garden.

In between these routines I fit in any other activities that need doing such as appointments and my housework. Most days the morning routine takes me all the way to lunch time by the time I add rests in between short sessions of the last activity.

On Wednesdays I tend to have doctors appointments in the morning (and sometimes the afternoon as well) which replaces my mental activity and usually means the rest of the day is just resting.

How do I plan on Pacing?

Pacing appears to be key, both to managing my pain levels (from the Fibromyalgia and Pelvic Congestion Syndrome) and my energy levels so as to avoid or minimise crash days.

Over the last few months my number of crash days (where I can’t do much at all – I may push myself to do my exercises or some housework/an appointment – and spend most the day on the couch resting) have increased dramatically again. I thought it was as a result of increasing my Lyrica dose, but as I’m coming off that (I have a week to go) I’ve realised that even though that has played a small part I’ve also just been doing way to much and missing my rest breaks because of how foggy I’ve been lately. The Lyrica also seemed to have been blocking my tell tale signs that I’ve done too much, such as my sore throat and the slight increase in pain levels.

I am going to be pacing in two different ways:

1. Over a week or longer period I will be making sure my appointments and social events are spaced out enough that I have time to rest in between them. This will mean learning to say no to some events and learning to prioritise what is most important.
2. Throughout each day I will be listening to my body and adjusting what I do according to my symptoms. I will try to alternate physical and mental activities, as well as making sure I have rest breaks whenever my throat begins to get sore or my pain levels begin to rise (I’d like to do it before symptoms occur but I don’t want to go to the extreme of saying I’m going to do everything in 15-30 minute blocks – this would be the next step if I’m not able to pace myself based on listening to my body).

How do you pace yourself and do you have routines to make sure you manage to do the most important things?

ME/CFS Primer for Clinical Practitioners (2014 revision)

As many of you would be aware, I’ve been struggling a lot lately. Between the process of coming of the Lyrica and an increase in social activities I’ve really overdone it the last few weeks.

My doctor is starting to reach the end of his ideas for what we could try to help me manage my symptoms and lifestyle with them so I have begun doing more research into what is out there and what I should be doing.

The other week one of my friends, who also suffers from ME/CFS sent me a link to the newest primer for Clinical Practitioners from the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Click to view document

This document outlines the most recent research, diagnostic and treatment options for doctors treating people with ME/CFS. I found it useful to see where research is at, what drugs and other treatments are recommended for management.

It has reminded me that I really need to get back into managing my lifestyle, pacing and learning to say NO to things that aren’t helpful for me.

I have begun doing this with the decision to come off the Lyrica. I’m now about half way through the weaning off process and, although pain has risen slightly and I’m finding I’m having a rough time emotionally right now, I feel this has been a good step for me.

My brain is starting to clear again, while on Lyrica (especially at the higher doses) I was struggling to think at all. Now I find my thinking is back but I’m still struggling with word retrieval and a few other brain fog symptoms.

I am now able to once again feel when my body is saying enough is enough and, even though I haven’t been doing well listening to it so far, this is going to be beneficial as I ramp up the pacing again. On the Lyrica, the sore throat and the increased muscle aches weren’t there and I think that is part of the reason I kept pushing myself to crashing point.

When I see my doctor tomorrow I’ll be discussing the following ideas/problems:

• Pacing
  • how to best balance pacing with still having quality of life (E is concerned that if I pace too much I’ll be limiting my quality of life)
  • Housework as part of exercise routine
• Revisiting a nutritionist/naturopath to make sure that my diet is the best it can be for increasing my health and to find out which supplements I should be taking.
• Emotional support
  • I’m struggling with the lack of control I have at the moment with where my life is heading. I keep getting worried about never being able to start a family because of my health.
• Getting a referral to another gynecologist for a second opinion on the Pelvic Congestion Syndrome treatment
  • The pain has been increasing for the last month or so and Depo Provera isn’t healthy to remain on long term so I need to find a different treatment option.

If you, or someone you know is suffering from ME/CFS I would definitely recommend taking a look at the Primer above and even sharing it with your doctor/medical professionals.

What treatment options do you use for chronic fatigue or pain?

Do you think this primer would be helpful when talking to your medical team/doctors?

Tools in the Kitchen – easy cooking with chronic illness

Last week, while making the most delicious Lentil Burgers I’ve ever tried, my stick -mixer-thingy-ma-bob died (sorry struggling with words today 🙂 ).

Because we wanted to make another batch of the burgers, and I use my sticky thing every day to make my smoothies for breakfast, we began searching for a replacement. A few difficult discussions and some online research latter (I didn’t do enough research or considering the first time) we finally decided to replace it with a food processor/blender combo.

Set up as Food Processor…

Set up as Blender…

As you can see in the photos above, we’ve set it up in the corner of the kitchen. Behind the base (not in photos above) I store all the different blades for the food processor.

The box of bits… blades to slice, grate, crush and mix using the food processor

Having used it for about 4 days now, I’m already wondering why it took us so long to get something like this. For the lentil burgers, it halved the time it took me to make the patties. It doesn’t make too many more dishes to wash AND what dishes are made are easy to clean.

I would say having this will make it a lot easier for me to begin doing more cooking in the kitchen. I had already built up to trying to make dinner at least 3 nights a week and I feel this will make a lot of that a lot easier now.

We also got another stick mixer thingy (but a cheap one) to mush the soup in the pot or make small batches of salsa, crushed nuts, etc (it has a small food processor bowl).

Do you use appliances to make working in the kitchen easier?

What appliances or tools would you recommend for others suffering from chronic pain and fatigue based illnesses?

How I spend most of my time these days

               

                

All photos above (c) E.S., 2013