February 22, 2013

From Then ‘Til Now

Posted in Journey tagged , , , , , , , , , , at 8:27 pm by Reva

With my current lingering crash I’m considering returning to the specialist I saw about 5 years ago. This specialist played a big part in my acceptance and understanding of ME/CFS, and while life has intervened since, I think he may hold the key to some symptom relief. You can find the prequels to this post here, here, here and here and here and here and finally here (hmmm, maybe time to update and make this a little more user friendly…) .

A while after visiting the naturopath I found out a GP in Victoria who specialised in ME/CFS. I was pretty excited, especially when I found that I didn’t need a referral. I was a bit concerned about the cost of the appointments but the cost of interstate travel to get there, not to mention the toll a visit to this doctor was going to take on my health.

I was pleased when I found out the initial appointment could be done remotely, using surveys I completed and sent back and a phone call with the doctor’s practice nurse to collect some more data. There was also a request for blood tests which were sent back to the doctor.
I learnt a bit from the phone assessment. One of the things that really stuck with me is that the only activity that isn’t considered to use energy when measuring activity levels is watching television (and sleeping or lying down). I watch a lot of television. As a general rule, if I’m not working, sleeping or doing the essential household chores, I’m watching television.
The second visit was a face to face visit with the doctor. He was a kindly man who explained things really clearly, with lots of diagrams. He wrote so much down for me to take home, obviously used to working with people who had poor memories. He did some more tests, and prescribed a few follow on lab tests based on some of his findings.

Pin Cushion

Just another trip to the pathologist

One of the tests he did that day was a standing test. I started in a reclining position, and blood pressure and pulse rates were checked. I then had to stand with these tests being repeated every two minutes for up to 20 minutes. While standing I wasn’t allowed to move – not even wriggle my fingers or toes. The results were put into a computer program and changes in my pulse pressure and heart rate were calculated and graphed. Apparently this test is done to rule out POTS. During the test there was a 29% increase in my heart rate and a 29% decrease in pulse pressure. I was told that a 30% change in pulse pressure warranted further investigation for POTS. He decided to treat this as reduced blood volume and prescribed an electrolyte solution to drink a litre of each day, along with a medication to stabilise my heart rate.
He suspected I also had symptoms resulting from reactive hypoglycaemia and increased urinary excretion of potassium, so he sent me off for some tests to follow this up.
And finally at the end of the visit, using information from the questionnaires and the tests that had been completed he actually officially (well, to me it was official) diagnosed me with ME/CFS. We went through the Canadian Diagnostic Criteria together and the outcome was pretty clear. A few of the criteria I wondered about, like the immune manifestations. I never (touch wood) get sick. He pointed out that that I have chronic hay fever, asthma and allergic dermatitis. His examination also showed I had tender lymph nodes which fall under that category.
I decided to bring a good friend along to my second appointment as while the information the doctor gave me at my first appointment made sense at the time, I had trouble explaining it to others. At this second appointment he confirmed that I had reactive hypoglycaemia, high excretion of potassium (which apparently causes “sighing breaths”) and borderline ratio between Vitamins D2 and D3 (which is apparently related to some dysfunction in the immune system). He decided to treat the potassium issues. The vitamin D issue was so border-line and the treatment was intense and long, and it was questionable whether it was having any impact. I went home with 2 new medications – one to prevent the potassium leeching out of my body, and another to replace the potassium.

I did have a third appointment which was a phone consult. After this appointment I started a regime of vitamin B12 injections, starting with one a week, and working up to daily. They were subcutaneous (like insulin) and not intramuscular like vitamin B12 Injections usually are so I learnt how to do them myself.

I was starting to feel like this!

I was starting to feel like this!

I probably kept all of this up for another 6 months or so. The B12 injections were the first to go. I moved interstate in this time and it became inconvenient and expensive, and I didn’t feel that I’d made any progress. Slowly the other treatments stopped too. The potassium channel regulator went next. It was also expensive, and it didn’t think it made me feel any better either. In the end I stopped the electrolyte solution because of a number of reasons. Like all the other things, I didn’t think I felt any better for taking it. It had a slightly artificial taste to it. It had sugar in it – it seemed like a contradiction to take on an extra 60g of sugar and 400kcal a day when I was already struggling with my weight and had a number of risk factors for Type 2 Diabetes, when the solution didn’t make me feel any better.

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Skip forward about 3 years to now – I’ve been taking that electrolyte solution (half the prescribed amount) for the past month or so. I’m still not sure it makes me feel any better but it feels like I’m doing something. I feel like I’m starting all over again from scratch. Well, maybe not scratch but close to it. My next step is to discuss “where to from here” with my GP. Unfortunately I can’t get in to see her for another two weeks, but I guess that gives me another two weeks to write a list (because there is no way my brain is going to let me remember on my own).

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February 16, 2013

The Versatile Blogger Award

Posted in Award tagged , , , , , , , , , , , , , , at 12:54 pm by Reva

I want to thank Mommabel from True Life Is Stranger Than Fiction who nominated me for The Versatile Blogger award and apologise for the fact that it has taken me so long to sit down and respond.

versatileblogger113

The rules of this award are:

• Thank the person who gave you the award and include a link to their blog (see above)

• Select 15 blogs/bloggers that you’ve recently discovered or regularly follow

• Nominate those 15 bloggers for the Versatile Blogger Award

• Tell the person who nominated you 7 things about yourself

• You can find more information and other winners here

Here are my nominations – a combination of blogs I’ve been following regularly for a while, and a few ones I’ve recently discovered:

1. Lethargic Smiles

2. Musings of a Dysautonomiac

3. Momentary Solutions

4. Rag And Bone Shop Of The Heart

5. Knocked over by a feather

6. Hope For Heather

7. Oh What A Pain In The…

8. Throughhikerlife

9. Does Your Journey Seem Long?

10. Debauchery Soup

11. decimawho

12. Disorderly Chickadee

13. neveraloneblog

14. The Nerves Prick

15. Do I look Sick?

To my nominees: Please don’t feel obliged to follow the rules if you aren’t into awards, have already received the award, don’t have the strength or for any other reason– I just hope that I’ve sent some extra traffic your way xx

And finally, seven things about me:

1. I love the colour combination of pink and green

2. I hate being untidy but I can’t seem to overcome it

3. My cousin introduced me to wine (fruity lexia from a cask) at my Confirmation BBQ when I was 10. We broke the news to my mum about 10 years later. A further 10 years on she’s still getting over it.

4. Sometimes I just want to run and I hate my body for not letting me do it.

5. I love the TV show Scrubs. It’s my go-to section of my DVD collection when I’m having a bad day

6. I have conjoined toes. My swimming teacher told me it would make me swim faster. My swimming teacher lied.

7. I think my dog is hilarious, but accept that I might be biased.

February 9, 2013

Stuff

Posted in ME/CFS tagged , , , , , , , , , , , , , , at 11:35 am by Reva

So much has been happening in the last week or so, and I’ve had so few spoons left to write about it all; but I have a week off!  When I scheduled this week off (it was the next available week when I realised I desperately needed a week off just before Christmas) I planned to head interstate to catch up with my closest friends.  When I got sick at home at Christmas time I decided to return home for part of the week instead, to catch up with the friends I usually meet up with at Christmas and missed out on because I was sick.  Now, 6 weeks on, it has turned into “I’m going to hang around my house and do stuff”. 

By “stuff” I mean things like put away the washing.  For the past four weeks I’ve been living out of my washing basket (clean washing – I at least manage to clean it).  When I can’t find what I need in the washing basket I go to my dryer, which has the most recent clean washing in it.  The dryer gets emptied only when I’ve completely run out of enough clean clothing (or I can’t find it) to dress in an acceptable way to go to work and I have to do another load of washing.  This system has been working for me.  It’s let me get away with doing a few things that I probably wouldn’t have managed had I stuck with previous systems.  For a while I felt a little guilty about using my dryer when the weather has been so warm and the washing would have dried in half the time out in the sun but I got over it.  But my goal for today was to hang the washing on the line, and I’ve done it!  I’ve also emptied the clean washing basket and folded the washing.  AND I’ve taken the washing out of the dryer and folded it.  It’s all on my bed but it is closer to being put away than it’s been for weeks.

More “stuff” I plan to do is to go to Ikea and buy a set of drawers I’ve planned to buy for the past 4 years.  Yes, that’s right, 4 years.  Ikea is a 2 hour drive and there is no way I’m going to Ikea on a weekend so I haven’t managed to get there when I’ve felt up to driving that far for just a set of drawers.  I’ve decided that under the current circumstances doing a return trip in one day would be ridiculous so I’m turning it into a holiday.  I’m staying in a hotel about 10 minutes away, right near a friend, and catching up with a few friends for a casual dinner at one of their homes.  It means that I can stick to my new morning routine (which I’m still perfecting but will write about soon), miss the morning traffic, buy my drawers and be back at the hotel before afternoon traffic and have a good nap before dinner.  Then make my way home the next day as quickly or slowly as I feel (I’m picturing a leisurely brunch in the sun but we’ll see how that pans out).

I also have a heap of phone calls I need to make (somehow my brain can only cope with one a day of those so they tend to build up), baskets of stuff to put away (does anyone else tidy the house by sticking everything in a basket to “put away later”? I think I’m up to three baskets) and other general day-to-day stuff that seems to have crept up on me.  The best thing about all this “stuff” is that it’s been waiting so long to be done I really am not worried if I don’t get it done.  No pressure. 

What I’m really looking forward to is sewing my quilts and even if the other “stuff” doesn’t get done I plan to do some sewing and writing every day.

February 2, 2013

Fighting the Sleepless Nights

Posted in Crashes, Strategies tagged , , , , , , , , , , at 10:43 am by Reva

Sometimes when it feels like everything around you is falling apart, when you are playing things that are frustrating you or you feel like you aren’t doing properly around in your head instead of falling asleep.  When it feels like these things that you feel like there is no solution to these things but you’re determined to find one, or work out where you went wrong, I think it helps to take a step back and remind yourself of the good things you are doing or have achieved, and of the bigger picture in general.

As I’ve mentioned I’m going through a crash that for me is one of the worst I’ve had.  I am feeling like I am not doing my job properly as a result and that I don’t have the support of my direct manager.  I acknowledge that some of this is because I’m yet to find the courage to sit down with her and fully explain to her what my “fatigue thing” is (and that no matter what response I’ve had with regard to this in the past, it’s a conversation that has to be had).

Last night as all of the contradictory comments, the emails that contain underlying complaints certain people don’t feel that they are not getting what they expect from me and how they could do a better job, the conversations I’ve had and wished I’d handled better and the conversations that I want to have but am too scared to have were playing in my head when I should have been sleeping I turned on a light and started to write down the things I am doing well and have achieved.

  • I have acknowledged that I’m not getting better like I used to and have started to take steps to improve my health.
  • I have ordered a meal program where all my meals arrive pre-prepared to my door once a week.  This has helped my save energy that I would normally use on supermarket shopping, meal preparation and washing up.
  • I have started to reintroduce previous treatments – I am doing my best to drink my electrolyte solution every day.
  • I’ve spoken to our HR department about my options and now have avenues to pursue.  Plus I know I have people who can support me when it comes time to have the above conversation.
  • I’m doing reasonably well at keeping my new year’s good intentions.  I’m doing a reasonable job of leaving work on time, I’m sticking to my timetable but trying to be flexible if I can. I’m colour coding my day and my patient list so I can quickly identify the priorities.
  • I am accepting I need help and researching the best way to get it.
  • I am starting to stand up and state when I believe that something I see is affecting those around me (now to start doing it when it’s just affecting me!)
  • I am realising that if those around me are also stressed, anxious and exhausted, it is not me and my medical condition that is the problem.  It is the environment that I am in that is affecting my medical condition.  And while I think the above points are going to help bring my health back on track, I think this point is key to solving the problem.