Carolyne’s Health Odyssey from 2004-2007
- November 6th 2004
- December 5th 2004
- January 14th 2005
- February 13th 2005
- March 5th 2005
- April 2nd 2005
- May 7th 2005
- June 5th 2005
- July 10th 2005
- August 3rd 2005 – updated August 21st
- September 7th 2005
- October 1st 2005
- November 7th 2005
- December 1st 2005
- January 4th 2006 – Happy New Year!
- February 6th 2006
- March 10th 2006
- April 10th 2006
- May 8th 2006
- May 23rd 2006
- September 3rd 2006 – Back from Summer Break!
- October 16th 2006 – Before and After
- April 11th 2007 – Down, but not out!
See the main Odyssey Blog for entries from 2007 onward…
I have recently been through a very interesting development in
my health odyssey…one that I will share with you on a regular
basis in this “mini-log” forum…
In my Mind over Matter story above, I explained
a bit about a recent difficult bout with my MS and general health.
Thereafter, I experienced a very interesting (in retrospect) and
unusual change. My fatigue increased to the point of utter exhaustion,
and I began to develop noticeable allergies: I reacted to a blackfly
bite by swelling into hives around the bite location which did
not heal for over a month; I developed allergic reactions to mascara
with itching and watering eyes (I tried 3 different brands before
deciding enough was enough). In June 2004, I began to swell up…literally
swelling up like a balloon…with my hands and feet swelling and
turning purple, visibly and alarmingly. The swelling became so
bad that my former husband wanted to rush me to emergency on a couple
of occasions! I began to notice that the swelling, while chronic,
worsen within a few hours after my Copaxone® injections – and to
make it worse, my chronic weight gain seemed to be increasing
at a rate of 1-2 pounds per week!
On one of the worst days, where family wanted to rush me to the
hospital for the swelling, and the hives on the bug bites that
refused to heal, I contacted my local MS clinic nurse to tell
them that I believed I was developing allergic reactions to my
drug therapy (as well as many other things!) They made an appointment
for me to see them immediately.
Once I got in there, I talked with the Nurse practitioner and
my MS neurologist about the entire developing situation. I discovered
that, though rare, weight gain is indeed a side
effect of Copaxone® for some patients. I also discovered, again
though rare, that there had been reports of allergic reactions
to Copaxone® in some patients…though this was extremely rare
for developing after a period of un-complicated use. I had reached
a point of diminishing returns…while the Copaxone® was supposed
to help my MS, my health was becoming seriously threatened by
too much weight and allergic reactions! We decided to stop my
use of Copaxone® immediately and see if my symptoms cleared up.
Well…within 3 days my symptoms cleared up! The chronic swelling
disappeared completely! In further discussions with my neurologist,
we decided to keep me off any drugs for at least 6 months so that
I could clear my system. At this point, we decided the first thing
I needed to tackle was to shed the weight that the medication(s)
had piled onto me. Now that I was off the Copaxone®, I was finally
seeing the scale go down for the first time in over two years!
(I had gone off the Celexa months prior to this, with no difference
in the weight gain issues…).
I began a regular exercise program once again…though the fatigue
and leg pain was so bad I was only able to manage 10 minutes of
walking before collapsing for the day. I slowly increased my exercise
by one minute per week until I was able to do 20 minutes…then
25…now I am up to 30 minutes of aerobic activity! I also began
a light program of strength training every day after my aerobic
activity…just a few light reps at first….now more.
At this time I also tackled my diet much more aggressively than
every before, seeing a nutritionist and then joining the Weight
Watcher’s program to give me the structure I needed. Weight Watchers gave
me the flexibility I need for my dietary restrictions (no gluten
for me) and it promotes a low-fat concept which seems to work
best for people with MS.
- What I have noticed so far:
- I need to exercise regularly…it keeps my leg pain at
bay. But the balance is very clear for me. I have noted
that the best program for me is to exercise two (2) days
in a row, then take a rest day. If I try to do three (3)
days of exercise in a row, the leg pain comes back big-time;
if I don’t exercise for more than one day,
my leg pain comes back with a vengeance by the second day.
Kind of interesting, ain’t it?
- My weight loss is fairly steady and the low-fat diet seems
to help reduce my symptoms dramatically. As does the weight
loss itself, of course! To date of this writing (November
6, 2004) I have lost 10% of my body weight!
- My energy is much higher than it has been in over two
years. Oh, I still have my “MS days”, as I call
them, but my overall energy is noticeably higher.
- My muscles are returning to good form…and my calf muscles
have actually been able to loosen and relax for the first
time in two years. For me…that in itself is a small miracle!
- I need to exercise regularly…it keeps my leg pain at
I will keep you updated as I noticed more changes in my body
as I continue with my new healthier lifestyle!
I saw my Neurologist this week…not so fantastic news.
It seems my disease is fairly active, and he noted some deterioration in
my left leg in terms of response and mobility. He figures between my MS Hugs and
deteriorated leg issues, I have developed more lesions on my spine. Poop.
And ironically, since I have been off Copaxone® since June, I have been
feeling great – better than since before I started the drug over two years ago!
At the neuro’s office, I read an interesting study that found that 6 out of 42 people developed
antibodies to Copaxone®, and some experienced weight gain due to the
drug, too. It would seem I am one of the lucky 6 to have both! Interestingly enough, another article found on the
Internet at MS World Resource Centre noted that though they did find evidence of antibody development in people taking Copaxone®, they were not neutralizing antibodies, as with the other MS drugs, and as such did not interfere with Copaxone’s clinical efficacy. But, the bottom line seems to be that they still do not know whether or not these antibodies actually interfere with the drug’s ability to work properly.
Anyway, because of my Copaxone® reactions and recent MS activity, the neurologist
wants me to start Avonex immediately. But…I don’t want to! I am finally succeeding at taking
the weight off, and am feeling better than I have in a long time. Also…I must admit I am enjoying
being needle-free! And I am really liking having no drugs, and no side effects to deal with. I have managed to put him
off until the spring to give me time to shed the remaining weight –
but he wants me to return and start Avonex®. But Avonex® terrifies me!
So the question I must ponder is over the next few months is – to medicate or not to medicate.
Is it better to live medication-free and side-effect-free, risking
disease progression, or is it better to take the medication, live
with the many side-effects, and hope it slows down disease progression? I
am just not sure anymore, given how I seemed to have been developing allergies to so
many things. Before the Copaxone, I was sure the
medication was the way to go – now I am uncertain. And Avonex
really scares me because of the size of the needle…so that is another hurdle I would have to overcome.
I may be a strong competent professional woman who can handle many things life throws my way…but when
it comes to needles, I am a big chicken! But…I have a few months to give this some thought.
Meanwhile, back at the farm…my weight continues to drop slowly and steadily. But, curiously, I
have had to increase the number of days in which I exercise in order to keep the pain in my legs at bay. It seems I now have to have 30 minutes of cardio on my elliptical trainer every day, without fail, to keep the pain at bay. If I miss a morning’s exercise, I am in serious pain by the end of the day. Curious. Is this because I am in a small exacerbation of some sort? Is it because of the change in the weather to a colder, darker, winterier scenario? Or is it simply that my muscles now require the daily activity to keep things running more smoothly? I don’t know.
Only time will tell, and I will keep you posted on my progress, and any further developments as I notice more changes in my body
with my new healthier lifestyle!
2005…A New year…A new resolve.
Well…I am down 30 pounds now. Another 50 to go! And with my New Year’s Resolutions
firmly in place, I resolve to shed those 50 pounds by the end of June. Can it be done? I think so…
Frankly, it has to be done. My neurologist still wants me to start on a new CRAB drug treatment. But this time, if I decide to do it, I want to start on a well-marked and distinctly healthy playing field!
Despite very long hours in full-time French immersion (needed to upgrade my francophone ability in my job as a meteorologist – and to enhance my personal “je ne sais quoi!” –grin! ), I am still feeling pretty good. I did not have my usually wicked December exacerbation this time round, though I have been more fatigued of late, and had the odd mini flare-up of symptoms. Personally, I am chalking that up to 60+ hour work weeks due to my intense study efforts, and the cold, dark weather.
I have kept to a very strict exercise schedule – I do 30 minutes of cardio every morning upon rising, plus 20 minutes of weight and abdominal exercises after that. Yup – Every day. I may miss one morning’s exercise every 5 days or so. But I am finding that if I miss a day, my legs are absolutely killing me by the end of that day, especially the left leg. Absolutely rock hard with spacticity – and my left knee gives out regularly. Hmph – guess the doc was right about my left leg deteriorating.
One thing I have noted of serious import is that my diet is truly best being low-fat and as gluten-free and sugar-free as possible. For a couple of weeks prior to Christmas, I allowed myself to “cheat” more and more, giving in to the desire to eat gluten products (pasta, pizza, bread)…and of course the inevitable plethora of sugary goodies that come during the Christmas season. I really noticed, very distinctly, that after a week or so of such decadence, my fatigue increased ten-fold, my MS Hug pains flared up significantly, and my MS fog increased as well, as did the spasticity in my legs. But, within days of cutting out all the gluten, the excess sugar, and reducing fat intake again…my symptoms settled down. My main source of fat continues to be a daily tablespoon of hemp oil, for the necessary EFAs. In addition, I make sure I take a daily vitamin supplement and a daily Vitamin D supplement. And daily salads have become my favorite food…am I sick, or what?
What a month! Between putting in 12-14 hour days, 7 days a week, on my french immersion training, and being pounded by
blizzard after blizzard, I must say I am and have been mentally and physically exhausted!
During the latter half of January, the weather in Nova Scotia was interesting, to say the least. During that time, we here in
Nova Scotia experience 3 blinding blizzards in the span of 7 days!! So, on top of the huge effort in trying to
master the french language, I was also confronted with repeatedly trying to man-handle a snow-blower to remove
the 4+ feet of snow from my driveway. My boys helped as best they could, and even learned to use the snowblowers,
but it weighs more than they do – so their efforts were usually restricted to shoveling the walkway to the front door. But, we came through it intact, though all very tired.
The toll it took on my health was increasingly apparent, though. No matter how much I try to tell myself I am invincible, my body always finds a way to show me that I am not! As my fatigue and stress increased, my cognitive abilities went down-hill. Through Occupational therapy, we determined that as my fatigue worsens, my cognitive skills in the categories of “Calculations” and “Word Memory” become impaired, to worsening degrees depending on my fatigue level.
The “Calculations” part means that as my mental fatigue increases, my ability to add, subtract, multiple, or divide simple numbers deteriorates. Easy enough to fix – I always have a calculator in my purse. But it hurts my pride, because with a M.Sc. in Astrophysics, numbers have always been my “forté“.
The “Word Memory” part presented more of a challenge to me – especially since I had been in language training since November! But, the good news was that it didn’t matter what language I spoke, the word memory was affected by my fatigue in any language. Why I call that “good” news was because I was starting to think I just could not learn a new language, because I kept forgetting words all the time. Turns out that I can learn a new language, despite the word memory problem – but I simply have my little “MS Moments” where I completely blank out on words…in any language. While this can be frustrating, I can usually work around the word I am seeking. And, often, people simply “fill in the blank” as we go along in conversation, and the MS Moment passes relatively un-noticed. And I am always good for throwing in some self-deprecating humor to lighten the moment! The good news is that, despite the fatigue and the word memory challenges, I came through my French language training with flying colours. Carolyne -1, MS – 0!!!
Physically, as my fatigue and stress increased, my leg pain and MS hugs came back with a vengence…especially in my left leg. While the daily exercise helped reduce it, I realized I had sunk into an exacerbation. After trying to increase my exercise in an unsuccessful effort to reduce the pain, I realized that I needed to reduce the intensity of my exercise in order to reduce my fatigue levels, and thus reduce my pain. So I cut back on the intensity and frequency of my exercise program for the past couple of weeks…and that seemed to help. I am now only this week starting to ramp up a bit again, and starting to see a bit of a reduction in my fatigue levels.
So, the morale of this story is to read your body’s signals…and reduce stressors and/or exercise intensity as much as possible when you are experiencing an exacerbation. But don’t cut everything out entirely…try to maintain a happy minimum!
Back into the shift-work swing… it ain’t so easy any more.
This time of year always brings its own kind of impatient, frustrated ambiance. We are tired as heck of winter and the short dark days of February – March brings a hint and a promise of brighter days ahead.
For me, March can sometimes mean the tail end of a series of what seems to be seasonally triggered MS exacerbations! At this time of year, my MS symptoms have usually been at their worst. This year, they are not quite as bad – but the fatigue is killing me! I am so very tired all the time…and I simply have not had the stamina to keep up with my daily exercise schedule as I was when I was working days. I find the days I come off my night shifts are basically useless – forget exercise! I can barely think let alone exercise! I am hoping that I will re-adjust to the shift work schedule soon…otherwise I fear I will be living in an MS fatigue-induced fog!
On the up side, I have finally broken my weight-loss stall. I was getting pretty sick of losing and re-gaining the same 2-3 lbs. Maybe it’s the fatigue? It takes me so much more effort to expend any energy – maybe it burns more calories? (Wouldn’t that be a nice side benefit for a change, eh! ;-) So now I am back on track for trying to lose the weight that all the drugs helped to pack onto me in the past 2-3 years. I am 35 lbs down…45 lbs to go! I had a nice compliment the other day – the sister of a good friend of mine, who lives in Poland, saw me for the first time since April of last year. Well, she had no idea who I was because of all the weight I have lost so far! That really re-motivated me!
One thing I recognize deeply more and more: those of us with MS have absolutely no control over what path our MS will take, but we do have control over what path we ourselves will take in order to deal with that same MS. I choose to deal with my MS by taking charge of my health and my body by feeding it the healthy nutrients it needs, and trying to give my body every fighting chance by getting all the excess weight off. (That way, too, if I ever have days where walking is a challenge, it won’t break my hubby’s back to throw me over his shoulder!)
Ah…spring is just about sprung! The birds are singing, the snow is melting, kids are out on bikes…and the winds are changing. So why am I feeling so darned crappy and utterly exhausted???
The past month has been quite the struggle. Whether it is re-adjusting to a very hectic shift cycle, or coping with daily stresses at home, I just can’t seem to get to a place where I feel on top of things this month. But…is this MS, or just the time of year?
Sometimes it can be so frustrating trying to figure out what is MS, what is seasonal, and what is just me. The past few weeks I have been fighting to do the exercises I have been doing for months. I noticed my strength was down to nearly zero. Yet now, as the sun is beginning to make itself felt and milder temperatures are on the way, my strength is returning – I can feel it in my workouts. I have been sleeping a heckuva lot more lately – every day off work is spent in bed, unless I am running off to physio or the doctor for unending rounds of check-ups and “tabs” being kept on a work-related injury. I am forcing myself to slow down (again) – I get so caught up in the “busy-ness” around me, both at home and at work, that I forget to take care of me. And if I don’t take care of me, who will? But I gotta admit, it is always much harder than I thought – to say “No“, when I wanna say “Sure, I can do it“. I know I’ve been here many times before – but I seem to go through it over and over. (Hello. My name is Carolyne and I’ve got SMS – Super Mom Syndrome.)
I came across a saying by an unknown author lately that just spoke to me deeply: We cannot control the winds, but we can adjust our sails. It was like an “Aha” moment, as Dr. Phil would say! The winds of MS change all the time in each and every one of us who play footsy with it – we cannot control those MS winds, but we can adjust our sails in order to cope with the situation.
Well, time for me to take up “sailing” and adjust my sails! Join me, anyone?
April Showers bring May Flowers…let’s hope that is true. The past month has been a month of showers and major changes in the wind! Talk about having to learn to adjust one’s sails…I had to adjust the whole ship!
The month began with quite the BANG . On my birthday in early April, my soon-to-be ex-hubby (the person whom I had erroneously believed was my best friend and soulmate) announced that he was leaving me to “find himself“, and moved out during the last week of April. Ouch. Sails needed big adjusting here…
In the middle of all of this stress, the surgeon with whom I have been waiting for almost 2 years called to say an opening freed up and he could take me immediately for surgery to repair my right wrist. The choice was to either take it then and there, or wait for a possible 4 more years as the waiting list grew, and face the looming risk of being unable to work due to the wrist injury (ironically not due to my MS). Of course, I took the surgery opportunity. This meant 4-6 weeks of not being able to work or do anything with my right hand – including this website. Ouch. Not an easy task for a person who does not have a “do nothing” bone in her body! Sails needed more adjusting here…
The good news is that through all this stress and change and difficulty, my health is not taking a serious turn for the worse, other than flare-ups of my symptoms of fatigue and MS hugs and Leg Pain – which I am used to anyway. The flare-ups, while bothersome in themselves, are easing as time passes. And, I lost 6 pounds! This brings my grand total to 40 pounds lost so far – 35 more to go! And they will go!
One of the lessons of life this is teaching me is to accept graciously the outpouring of love and support your friends and family can give you. When you have MS, you sometimes think nothing else bad or upsetting can happen to you – because you already have something earth-shattering to deal with, and that life couldn’t be cruel enough to hand you more. But MS or no MS, life’s challenges continue. Being incapacitated due to an injury unrelated to MS, while dealing with the enormous stress of one’s life being turned upside-down when a spouse decides he can’t handle the challenges of life in a marriage with someone, who has MS or not, has been one of the most difficult challenges I have had to face to date. Fears for the future crop up, such as “What will happen to my kids if I have a serious MS exacerbation? What will happen to me? How do I do all of this alone?” But I realized that I am far from alone – no matter what happens I have family and friends that support me unconditionally, and life goes on…I just have to re-adjust a few sails here and there!
After all, life is not about finding oneself…life is about creating oneself. And I am one heckuva creative person!
First off, I want to express my deep heart-felt gratitude and appreciation to all of you
– friends, family, and e-friends – who wrote or phoned to offer their support in the last month or so. Wow.
I feel truly humbled. Thank you.
That said…OK, world,…enough with the changing sails and winds already! What an incredibly challenging spring this has been!
If my recent marital dissolution and wrist surgery were not enough, my brother had a heart-attack, my sister nearly died due complications from a dog bite, and
apparently my own MS symptoms flared-up enough to affect my breathing to the point of causing my sister to feel I was near death myself one night!
And May here in Nova Scotia just rained and rained and rained…
I would say we are due for a nice bright ridge of high pressure with calm winds…on all fronts!
After my last Odyssey input, I “crashed”…my symptoms flared big-time due to all the continued stress caused by the marital separation and the pain from my wrist surgery, causing repeated MS hugs, and negatively affecting my breathing.
And I began having increased difficulty focusing mentally – not a suprise, eh? I was unable to do much of anything for a few weeks, from updating my website, or checking e-mail, to even making a simple dinner for myself and the boys. Thankfully, my sister was here to help me out (pre-dog bite scenario of her own!). She helped
lighten the load, so to speak, and allowed me to get the much needed rest for which my body was screaming. This got me as ready as I could be, given the circumstances, to return to work. Yikes.
Through all this, however, I maintained as regular an exercise schedule as possible (albeit some days not very vigorous), knowing as I do that missing too much can mean even more pain for me.
I also used my exercise sessions as daily meditation sessions and deep-breathing training to try
to combat the MS Hugs as best as possible and stretch my chest muscles. However, due to my wrist surgery, I have yet to re-start my weight training on my arms.
Once my physiotherapist gives me the green light, though…then I will take it up again with gusto!
My weight has kind of stalled during this time, likely because my eating habits became more erratic, and my exercise levels changed. But, I know this is only a temporary situation. I will be back on the “losing end” of the weight scale soon enough! My motivation is to reach my goal weight by summer’s end, and maintain it for life, so that my kids have me around as fit and healthy as I can be for as long as possible! That will hopefully give me a fighting chance to allow my body to keep my MS as “controlled” as possible. I know that my long-term available time for able-bodiedness is more finite than the average Joe’s out there, and I want to make sure that I take every opportunity to prolong that time.
Pipe dream? Maybe…but let’s find out together, shall we?!
Summer is finally here! Yahoo! And with it comes the sweet hum of…the air-conditioner. My best friend at this time of year!
With vertigo becoming a more frequent symptom, especially in the heat, I have been learning more and more about what I can do:
- I can jump on a trampoline – but it makes me very nauseous and wobbly (but quite hilarious for children to watch!)
- I can walk holding the arm of a friend and set tongues wagging – or use the wall for balance (just prop me up…I’m good!)
- I can do stretches on the floor – but trying to do a workout on the elliptical trainer while vertigo is spinning ain’t such a good idea! What a wild ride!
- I can lie with my eyes closed, and imagine I am riding a roller coaster!
- I can turn my frustration and anger at some of the symptoms of MS into inner strength and patience, and apply that strength and patience to many aspects of my life.
My friend Steve, from MS Means, called to chat recently, and we discussed life and MS, and things in general. Again, he is a paragon of wisdom, and I appreciate him so much. I was lamenting to him about my nervousness regarding my decision to start a new drug therapy (Rebif® ) at the urging of my neurologist – I fear the side-effects of the drugs being worse than the disease itself. Well, Steve said, very bluntly “Girl, while you are still walking, try it all! Try all the CRAB drugs, and do all the dancing you can. Because if you ever get to the point where you can no longer walk, then it will be too late.” I may never get to that point of not being able to walk, but I will always follow that advice, and live in full appreciation of my mobility. Use it…or lose it!
On that note, I recently took up salsa dancing lessons for more exercise and some pure fun. I have always wanted to get into ballroom dancing on a regular basis, and just happened upon salsa classes. With my vertigo, the spinning we do can sometimes be quite dizzy-ing…but what a hoot! I want to pursue it deeper, and see if I can eventually break into competition…what a goal to have, eh?! My hope too is that the added physical activity will help break my weight plateau and get me back on the faster losing track!
I will be starting the new CRAB drug therapy in the next week or so…nervous, but determined. Let’s hope I don’t react badly to it, and that it doesn’t throw my weight loss goals out of whack! But then again… flu-like symptoms might make me lose weight initially, feeling so sick that I eat less…hmmm…
Well…it’s been almost 3 weeks now on the new Rebif® program. So far so good – the injection reactions are minimal, the side effects so far are minimal, other than some mild nausea and irritating MS-hugs for a short while after injection. Oh, and I sleep like a log every injection night – don’t know how well that will work on shift, but we’ll see! But, on the down side, I have had much more leg pain than I have had in a long time – related? I dunno…maybe it’s the heat?
I did manage to pump up my workouts a bit – able to do light weights again now. And daily walks with my dog help us both relax and get fresh air. Though I seem to have lost some strength in all my muscles…mildly, but noticeable to me. I will have to keep an eye on it…definitely fatigue related.
I must say I am enjoying the summer so far – vacation time, lake time, play time with the kids, salsa dance lessons…and just hanging with friends and renewing old freindships. It’s been a nice fews weeks – especially when the sun is out and the pool is ready!
I hope you are enjoying your summer so far, too!
August 21st update: I think I spoke too soon…within 2 days of my oddysey report, I began feeling side effects to Rebif ®, such as headaches and fever and even woozy-ness! Not fun…I seem to be acclimating somewhat to the date of this writing, or developing some tolerance, but we’ll have to see what happens down the road. Trying to mentally calculate the balance plagues me: “The hopeful chance that the treatment will slow the progression of the disease versus spending 3 outta 7 days feeling sick as a dog for years…hmmm…” I said I would give it 6 full months to see what happens…but then I may have another decision to make.
My O my…what a month…!
To begin with… my Rebif® status: I am up to the second week at 75%. Still get feverish and feel kinda “achey” afterward…but I have managed to work a night shift after a shot, and seem to be adjusting well. (Or am I just getting used to feeling like crap??? ;-) I do like that there is less injection site reaction, and though I still feel stressed at having to inject, I feel much less than on my previous treatment because it’s only 3 times per week. So far, so good…
On another note: I managed to cause some excitement at work this month. In the middle of a morning staff meeting with my director and other managers, I began to have a severe virtigo attack again. Now this would have been fine, or at least I knew what to do with it, except that a new symptom cropped up: I could not catch my breath! And in the middle of me trying to simply disappear into the floor, the director’s boss came in to present an award to my boss! So there I am, colour draining from me completely, gripping the edge of the boardroom table, trying desperately NOT to draw attention to myself…and the regional director is sitting one foot away from me! To make a long story short, I did not remain invisible for long. They took me into a sick room to lie down, but when I continued to have trouble catching my breath (and of course began to panic because of it) they made the decision to rush me to emergency. Of course, within a half hour of being at emergency, my breathing stabilized, so I kept getting bumped. After a few hours of that, I said that the dizziness I knew how to handle – with sleep – and convinced my co-workers to let me go home to do just that (on the promise that I see my doctor asap).
So…now I have a Ventolin™ puffer, just in case it ever happens again that I have trouble breathing…with instructions to go to emergency again if it happens, in the hopes that a doctor will see me in the throes of the attack, so that they can determine what is causing it. Sheesh!
My kids were oblivious to all of this, as they were with the sitter that day (since I was at work)…but my best friend, who is my emergency contact, call in “the troops” that day for me…and I ended up having another good friend and the pastor of our church meet me at the hospital! My sister out in Calgary was very upset (because our mother died from complications of an attack similar to mine). And now I know my emergency contacts plan works! As a single mom, that is really important.
But it was another wake-up call for me…and makes me yet more determined to shed the remaining weight and stay away from gluten foods and caffeine. They are just not my friends! Add to this that I have entered full-blown peri-menopause (yes, early!) and there is just no doubt that I really must watch my weight and my food very carefully. I have re-jigged my exercise routine, and must say I like the way my body is reshaping nicely…and the exercise is still crucial to controling the pain in my legs.
Life goes on. And I am like Tigger…I bounce!
Cooler days bring some relief from the heat and subsequent heat-triggered MS symptoms…but it says too that summer is fast receding…
This past month has been a month of re-adjustment: re-adjusting to shiftwork, re-adjusting to the kids’ school schedules, re-adjusting to the full dose of Rebif®, among many others. Some adjustments have been easier than others! My oldest is loving junior high, and my youngest is loving being a senior in elementary school! And I am loving the independence they are gaining!
On the Rebif® side of things…I am seriously thinking that this may not work out. I have been up to 100% of the dosage for a few weeks now…but I feel like I am literally living on Tylenol™ ! I do not sleep well the nights of my shots anymore…I am usually tossing and turning with leg pain and headaches and just a crappy feeling. Then most of the next day I feel completely worn out, achy, and have to replenish the Tylenol™ to minimize the symptoms. I really don’t like that. So…I am rapidly coming to the question : is this drug worth the side effects??? Now, I said I would give it a good 6 months, and I will. But in the New Year, I think I will seriously re-assess the whole drug scenario. I am of the opinion that it is better to live a shorter quality life than a longer crappy life. And at this point, I feel like I am spending 50% of my time feeling like utter crap!! This will take some serious thought…
Keeping away from gluten is truly key as well…I notice that when I lapse in my avoidance of gluten (usually due to fatigue and the ease and comforting taste of wheat products) I usually end up feeling very crappy and utterly fatigued for 24-48 hours afterward. So, I ask myself…is this piece of bread or cup of pasta really worth what it’ll cost me in the end? The answer is usually no.
On a brighter note, however…I am now down to a size medium! That’s down from a 2X back when the Copaxone® and medley of other drugs were at it’s worst in me! I am so happy that all my efforts are showing results! And the consistent workouts continue to keep the pain to a minimum – I do notice that if I miss a day, I have serious leg pain by late efternoon/evening. So that is quite an incentive to keep working out. And the muscle tone is noticeable. Noticeable enough that the opposite sex is beginning to notice…and “dating” is becoming a more frequent word around me. Aaagh!!…that opens up a whole new black box…dating in your forties with MS! What a scary concept! I’ll talk about that later (once I stop laughing)!! Stay tuned!
And the odyssey continues…
My month has been busy, busy, busy – how about yours?? I must say that the challenges of the past few months have gotten to me in the last weeks…fatigue being the biggest symptom to managle recently.
I started off the month with a slam! I had a shift cycle from hell, going from days to nights to days with no recovery time, six in a row! That took the stuffing outta me for a few weeks, let me tell you! I am only now beginning to feel like I am bouncing back – the fatigue was devastating! I dragged myself through most things, but did not have enough energy to make a few things. Some things had to slip through the cracks due to the extreme fatigue. I really don’t like it when I must let things go undone due to my health…part of the challenge of living with MS, eh??
I also got the chance to do the opening speech for the Living Well with MS: Medical Research and Hope series in Dartmouth on October 15th. That was such an honour!
I also got to go Albuquerque, New Mexico, for a week to attend a weather conference. Travelling on the plane for 12 hours to get there, then back the same 12 hours was no picnic for my legs (pain, pain, pain)…but the trip was great! The area reminded me alot of southern Alberta…and the history of the place is amazing. (The conference was good too – and the new friends from Montreal that I met while there were alot of fun.) I thought I would get more hassles at the airports carrying my Rebif® but they didn’t even look twice at me!
At the beginning of the month, I thought the Rebif® was possibly excacerbating my fatigue…but now I am wondering if I have made it around the proverbial “corner”…it has been about 3.5 months since I started the new therapy, and I have begun to figure out how to tolerate the drug better…such as by taking 2x8hr Tylenol™ tablets at least one hour prior to each injection. That seems to help minimize the side effects. If I must work a night shift afterwards, I take a couple more at about 4AM. So far, it seems to be doing the trick. I’ll keep monitoring my progress, and see if the improvement in energy level continues…I can’t say that I am too keen on living on Tylenol™ as I currently am, but we’ll keep an eye on that too! One curious thing I have noticed, that I haven’t gotten any answers about yet, is that within 8-12 hours of taking my shot, I feel like someone has come up and done a double-suckerpunch to my back in the kidney areas. It almost feels like the start of a severe MS Hug, but the ache is deeper, and more elusive. Strange.
And, on the weight loss front…55 pounds down!! Yippee! My clothes are again beginning to bag on me once again…I want to drop another 25 lbs, and then I will be at a good weight for my height, and best for my health. I must say, I have begun varying my workouts alot – I one half hour daily of aerobic training (elliptical trainer or aerobic tapes), then another one half hour of some form of strength training (weight machine, pilates, free weights). After all of this, I make sure I stretch well. This daily routine seems to really help in keeping my pain at bay. I try to rarely miss a day. As I have shed the weight and built up my muscle fitness, the pain becomes more manageable. But while my muscles have certainly toned and defined themselves, I still note that I do not have the strength I would have had years ago…the MS still affects muscle weakness – particularly noticeable on bad MS fatigue days. Another side benefit, besides looking and feeling much better, is that I feel stronger, and seem to have more energy (except when the MS fatigue is just too strong). Yet another benefit is that my sons are seeing the newer and fitter me, and have taken up their own regular exercise habits!! We are keeping it in the family!
Okay…it’s time for a bit of a rant!
As most of you know, I came off my previous MS therapy last year much the worse for wear, with an 80+ pound weight gain as a direct result of the drug and some other drugs prescribed to me to control some of my MS symptoms. Fast forward to the present, and I have now managed to take off over 50 pounds of that weight gain, albeit slowly, and am still fighting to get the last 25-30 pounds off.
Now, I started Rebif® this past summer, and have felt pretty much crappy since I started it. This, they say, is normal for the first 6 months until your body acclimatizes itself to the drug. On the plus side, my last serious vertigo attack was back in late summer, and this may (or may not) be as a result of the drug’s effects. Also, I have not gained weight as a result of the drug …another bonus! But on the flip side, I have been dealing with more and more pain …especially flank pain and left leg pain …and serious constipation as a direct result of the drug. Not fun …and definitely diminishing my quality of life.
SO I saw one of my plethora of doctors earlier this week, and she prescribed me a “new” pain medication that she felt would help me, called Lyrica (Pregabalin). She informed me that it had the typical side effects of dizziness and sleepiness. I started it this week, and had a dramatic reduction in pain initially, and the best sleep I’ve had in months! Imagine then my absolute horror when I discovered that one of the biggest side effects to this drug is WEIGHT GAIN!!!! I am totally exasperated!! Especially since my medical history states my troubles with weight gain from drug reaction and my fight to get this weight off!
On top of that, my other doc gave me prescription for my bladder symptoms, which he cautioned me to use sparingly due to its tendency to cause or exacerbate constipation. He then gave me a prescription for a laxative, a stool softener, and recommended fibre daily. I already drink over 8x8oz glasses of liquid per day as well as make sure I get adequate fibre…thanks to the wisdom of my new lifestyle à la Weight Watchers™!
What a fiasco …I feel like I am back to square one, with symptoms being managed by drugs, which causes different symptoms, so they give out more drugs, and so on. And this all traces back to me starting on a new CRAB therapy… I can honestly say I have just about had enough. Didn’t I fight to get away from that in the first place??? The only thing that is keeping me on the Rebif® for the full 6 months (into January 2006) is the very real risk of more vertigo attacks without it, and the doctor’s assertion that given my recent breathing problems in that last attack, if it happens again I should get to emergency immediately because he has a concern about “pulmonary embolus” which can lead to sudden death. Not so easy to disregard when you are a single mother with 2 young boys who depend deeply on her.
But I have decided that pain or no pain, I am NOT willing to risk serious weight gain again, because this just leads to even more problems down the road, from diabetes to cancer to increased pain from the MS and having to carry the weight on fatigued limbs. So, unless the doctor tells me the weight gain is minimal (as in 5 lbs or less)…ciao to the Lyrica! (To date, I have not been able to find information about how much weight people gain on it, and if it is due to increase appetite or metabolic reactions in the body.)
Stay tuned as I continue my on-going battle against the medically-created bulge and continue to try to figure out how to balance my life between MS, motherhood, full-time shift-work, and the ever increasing political pressures as a program manager. I think I’ll just go take a long, hot bath …where’s my wine? (Or is that whine? Maybe I’ll have some cheese to go with it…)
Happy New Year, every body!!!
I was gonna have this posted on January 1…but I ran into server host problems. It has now been rectified, and things should be fine as we head into 2006.
Looking back at 2005, it was a very challenging year, with both personal challenges and health challenges…but also a great one, with new friends, deepened ties with old friends and family, increased closeness with family, increased spirituality, and positive challenges on the work front.
This past Christmas Season was the best one I have had since my mother died in 1998! I worked over Christmas itself (and worked hard with a great team…big Atlantic storm over Christmas-Boxing day, and I ended working an extra day in order to handle some media calls and the like…maybe you saw me on CTV or CBC…yes, that was me ;-). But I also played, I exercised, I ate, I relaxed…and I hosted my annual New Year’s Eve get-together with friends and family. We ended up having a chocolate fountain that good friends brought over as the centre piece of the buffet table…amazing!
But, even amidst all the celebrating and relaxing…I also had my annual Christmas season exacerbation…albeit much milder than others I can remember. If Rebif is doing it’s job, it is lessening the severity of the vertigo attacks, and that Pregabalin (Lyrica) is definitely making my daily pain more manageable. Just being able to sleep better helps it all I think!
And on my weight journey… I started this Odyssey back when I was sitting at a size 2X, and I am really pleased to announce that I have made it to size Small pants! I am only about 15-20 lbs away from my goal weight, despite a minimal Christmas season weight gain (too much really good food…and not all cooked by me! ;-). I am so close, yet it feels so far, because my body is just hanging on to that last bit like gangbusters. So time for some new resolve…
My New Year’s Health Resolutions for 2006:
- Make it to my final goal weight by summer, through increased body building and good nutrition (I’m going for that size extra-small! ;-);
- Avoid wheat products more diligently (I was blissfully ignoring that over the last month or so ;-);
- Rest more when my body cues me (as in, actually listen more to my body! ;-)
- Keep on top of the MS drug slide, and keep them down to a minimum by continuing to use exercise and nutrition to manage the disease.
- Bring even more information to the MS Means website.
I have other personal resolutions, too, of course…but I’ll keep those ones to myself for now!
Happy New Year 2006! Bring it on!
Another month gone…and another 8 lbs down! Yip-Yip-Yahoo! I had just about reached my limit with the drug-related side effects of constipation and bloat…so I ramped up my work-outs to inlcude more sets of weights, and longer cardio sessions…and tons more water. The difference is staggering! I am at the point now where a 5lb weight loss makes a big difference…and it shows in people’s reactions around me. The funny thing now, more so than before, is that even despite the multiple sclerosis, I am probably healthier and fitter now than I have been since I was about 25 years old! And because I am so active, people are finding it difficult to believe I have any sort of illness!
And as an added bonus, because I am so much fitter than ever before, I seem to be able to recover from the fatigue better than I did before. When I have an exacerbation, it seems my body is able to bounce back faster afterward. That is not to say it still doesn’t decimate me when it comes…but it seems I can take it in better stride.
As to the Rebif and Pregabalin…my body seems to be adapting very well to them. I don’t really notice any side effects to the Rebif, as long as I take my 8hr Tylenol one hour before the shot…but I do notice I sleep more restlessly shot nights. However, if I am working a night shift, I will notice some aching by mid shift. The Pregabalin seems to be helping keep my pain down to a minumum…I still feel almost “normal” again! LOL!
The only thing right now that I would say really bugs me is the constipation…I cannot stand it!!! I haven’t yet mastered how to bring relief to that particular side effect, even with the prescriptions and recommendations given by the doctor…to I have had good weeks and bad weeks.
Last month saw me spending a week in Montreal due to a business-related matter – I can say now, after traveling so much in recent months, that traveling is very fatiguing as an MS’er and not as easy as when I was younger. Maybe it is being away from your own routine…but rest is critical for us MS’ers, and I have concluded that my own bed is critical to getting that quality rest! But each time I go out of town, I figure out a way to “maintain my routine”…such as, exercising every morning just as I do at home, bringing oatmeal packets and my favorite teas along for breakfast as I do at home, and going to bed at a decent hour, as I do at home! And of course maintaining my medications!
My next trip will be to Toronto, and this time I hope to be less affected by fatigue by incorporating these tricks. I also plan to buy a new bathing suit, because I found out in Montreal that when you wear a bathing suit that is too big for you (as in after a 60 lb weight loss), it tends to fall off when it gets wet!!! Now there’s a way to make your work colleagues remember you!
Wow…March already! Boy, time flies…whether you are having fun or not, eh?
I spent much of the past month dealing with a bad cold, maybe flu…despite the flu shot…and it took the stuffing outta me for a couple of weeks. Just as I recovered, I flew to Toronto for some work-related business. No matter how hard I try to ensure I relax on these trips, I always end up over-extending myself, and becoming very fatigued, again! (Must learn to stop going out with “the guys” for a few beers after meeting sessions are done for the day…must learn to go to bed before midnight while travelling…ya, one day! MS and social butterfly-ing can truly be at odds!;-)
Recently, I had an interesting feedback session with my neuro-psycholgist regarding my results from the tests I did back in December: according to him, I am a very highly functioning person with whom they have no concerns, at this time. I was told that I scored well above average on all tests, except scored average in math (which absolutely terrified me, given my mathematical background and my previously very high skills in math all my life). When I explained that “average mathematically” for me meant that I had lost significant abilities there, cognitively, the response was “Not to worry – you have a long way to go down before we are at all concerned”. Say what? Eh?
Now, while I understand that comment was meant to reassure me, it had the opposite effect! But apparently THAT is normal too!
Meanwhile, my weight continues to drop…thankfully…albeit slower once again. Ten more pounds to go until I reach my goal…which I am shooting for on my 42nd birthday in April. These last 10 lbs are stubborn, however! The plus side: as my weight has dropped, is the significant increased in my stamina, physical fitness, and my ability to manage my MS pain (still working on better managing the fatigue end of things). Also, wonder of wonders, I apparently look much younger than I did one year ago! I have gone from “Ma’am” to “Miss” from strangers, and double-takes from friends who have not seen me in a while. And the ultimate compliment from someone, which I might not have heard a year ago, was: “I would never know you have any kind of illness – you look so healthy and fit!” Just inpires me that much more to continue with my new lifestyle! (Now if I could just get that medication-related constipation thing under control…)
Big plans are in store for me next month, as a couple more milestones are reached! Stay tuned!
Well, here we are…April already. I have just had my 42nd birthday, and I took it back as My Day, since the specialness of the day was ruined last year when my ex-husband had decided that my birthday was a good day to tell me he was leaving me. This time last year I remember feeling only pain, shock, and fear – now, I feel strong, self-assured, and empowered, and so much lighter in so many ways! So much change a year makes, eh?
Reflections on single parenting: One thing that I reflected on at this time was the situation a single person with MS finds themselves in – it is different than that for a person with MS who has a spouse or significant other. Not necessarily in a bad way, but the difference is notable: when you have MS, you rely on your spouse/significant other to help pick up the pieces and support you when you have struggles with your health. When there is no spouse or significant other, you have to rely on yourself, and pick up the pieces yourself once you get back on your feet. No matter that there is family around you, and good friends that help at a moments notice – the dynamic is different. Children (if you have any) tend to try to fill in for the missing spouse/significant other…and this becomes a delicate balance to try to navigate…because though it is a given that children, with a parent who has MS, do indeed have a different role than their friends, we as parents do not want to burden them with the fallout of our disease. Despite this, they do have to deal with some fallout, simply because of the nature of the disease we call MS. Catch-22.
Reflections on dating with MS: Dating…now there is a very interesting topic. Surprisingly enough, I have been out on a few dates now, some good, some not as good. It ain’t the dating I remember! Whether you have MS or not, it can be quite the challenge to try to juggle kids, shiftwork, and fitting in time for a date with another adult! Throw in the fatigue from MS that can set in from all the daily juggling and stresses…well, that’s quite an interesting mix – “Nice to see you. No, really I’m not yawning because I am bored, I am simply very tired. Do you mind if I just curl up and take a nap?” Yeah…that always goes over well on a date! But, I still fully believe love and companionship are possible for those of us with MS. It will just take a very special and strong person to fill that roll for each of us. (I’ll fill you in later! ;-)
Reflections on springtime: One thing I have noted over the years is that many of us with MS truly struggle in the spring season months. Whether it is the depletion of Vitamin D stores from lack of sufficient sunlight over the winter months, or simply seasonal fatigue that hits us harder than most – March and April can be months that are truly difficult, health-wise. Personally, every March-April, my health has taken a down-turn, with increased symptom flare-up and devastating fatigue. This year’s “slump” was so bad for me that I have finally arranged for outside help in taking care of the house cleaning and lawn care, hopeful that it will help since when I try to do it all, I end up in bed for 2 days! I can’t necessarily afford it – but I can’t afford NOT to! I have had enough of an exacerbation, with the MS Hugs coming back hard, despite my exercise regime, that I have also returned to a strict following of non-gluten, and low fat, foods. (Over time, I had been feeling so good with my weightloss and better overall stamina that I let some things slide in terms of dietary restrictions. Bad move…always is…as my sister says, I need a brick to fall on my head for me to have an “Aha” moment! ;-) But coming to terms with realising that you can’t do it all by yourself can be very difficult – especially when you are a type “A” over-achiever like me! LOL! (Geez…haven’t I been here before? Maybe I need more than one brick, eh? ;-)
Reflections on the MS Walk: I am looking forward to the MS walk in May – and will walk again this year, no matter the weather, no matter what! Last year it rained and rained and rained…then rained some more, making for a very wet Walk. This year, I hope the Weather Gods take pity on us, and bring some sun! (You’d think with my connections in that regard, I’d have some pull, eh? Nope!) Join me in the walk in whatever city you are in, won’t you? Or you can sponsor me by going to the secure website at Carolyne’s MS Walk page . Yes…that is my shameless plug for pledges! ;-)
The spring has sprung, the grass is riz…time for us MS’ers to take in some much-needed sun…before we have to take measures to escape the coming heat!
May is a great month. It is the month buds begin to bloom in earnest. It is the month my children were born. It is the month we celebrate mothers around the world. It is the month we focus on MS Awareness across Canada.
The sun is coming back now that May has arrived…and with it, my fatigue is beginning to come back under better control. Whether that is a real physical reaction, or simply a psychological reaction to the lengthening hours of sulight – who is to say? Is it because I am within about 9 pounds of my goal weight? Could it be due to the absolute euphoria I feel at reaching my goal of attaining the pants size I was before my children were born? Could it be due to all of the very special people in my life that I adore and appreciate? Am I starting to sound like some crazy-lady? Maybe…must be sun-fever…I do get a bit giddy when I have blues skies and sun exposure! ;-)
The sun is definitely helping me to feel more human again…and eager to be outside enjoying the warmth and brightness. The urge to do a thorough spring cleaning is also strong…but this time I am wisely turning to outside agencies to help me get my house and yard in order. I have finally come to accept that it is ok – that I don’t HAVE to do everything myself. And truth be told, these people can do a much more thorough and energetic job than I can! And I don’t end up so overly fatigued that I have nothing left, energy-wise, for my family. Awesome!
One question that seems to come up frequently, at least from the women I know with MS, is how do you determine what is MS, and what is aging, or female monthly hormonal blips, or menopause. I like to joke that women with MS tend to have P-MSx2, because in addition to our MS symptoms themselves, we still must contend with Pre-Menstrual Syndrome, Peri-Menopause Syndrome, or Post-Menopausal Syndrome. Fun, fun, fun! So how do you tell all the symptoms apart? Well, does it really matter, at the time? Fatigue and the resulting irritability, whether due to MS, or some version of PMS, all needs rest in order to be alleviated. So…rest already! Give your body what it needs!
Sunday May 7th was the Supercities Walk for MS here in Halifax. What a fantastic day it was for the Walk: sunny skies, warm temperatures…and lots of Walkers! Two friends, as well as my loyal and always eager dog, joined me on the 8 km Walk…and the time passed very quickly indeed, filled with sun and laughter. I am always impressed and humbled by seeing the number of people who turn out to support those of us with MS…and even more humbled and awed by those Walkers and Volunteers who come out and join in the fight, walking and participating despite limb coordination troubles, using walking aids, and wheelchairs. My hat is off to all of you!
Well…I had better update you about the past couple of weeks. I have had a number of phone calls and e-mails about it, so I figured it was easiest to update you all here! ;-)
The week before Mother’s Day was a very stressful one…and turned out to be the logical culmination of a number of weeks of high stress, work overload (home and professionally), and me simply trying to burn the candle at both ends (as usual). During that week, a number of stressful events occured, daily and incrementally adding to my ever-increasing fatigue and doing a Grande Finale number on Friday. I woke up for a final night shift feeling ill, with a headache and nausea…but passed it off as nothing to worry about. I took some pain relievers (extra-strength, of course), and went about my usual routine of working out and getting ready for my shift. I was still feeling ill after my shower (which I had hoped would help my head) and then trying to eat…so I took a couple more pain relievers. By the time I arrived at work, my head was about to explode. In my wisdom, I figured I needed a caffeine boost, so tried to swig a caffeinated drink. By then, I was beginning to have difficulty catching my breath. At that point, I kinda clued in that maybe this was something more than just a headache…the breathing difficulties were not alleviated by the puffer (obtained last summer after a similar sudden attack) and I began hyperventilating as I tried to catch my breath…and by this time, I began to experience the virtigo, in full force. Added to it all was extreme nausea…and numbness and tingling in my hands and feet.
Well, my poor beleaguered colleagues had called 9-1-1, and an ambulance came to bring me to the hospital. So I was wheeled out (feeling like my head was going to explode with every move of the gurney and subsequent ambulance ride)… leaving my poor colleagues one person short on shift. Oooh…I hated that!
In subsequent discussions with my sister (who was in constant contact with the hospital) my blood pressure was spiking so high the paramedics couldn’t get readings! Long story short…I ended up spending the next 24 hours at the hospital as they monitored me…and after initially high readings, my pressure came down well over the course of the night. And my pain went away after they injected me with something to help the nausea and pain, together.
After a number of different tests to rule out stroke and clots, and sitting around waiting, the doctors came to the same conclusion as I had…this was another sudden-onset MS attack. In reflection, it seemed very much to have been an attack similar to the attack I experienceed late last summer (sudden virtigo, headache, and difficulty breathing). While this is not a typical MS grouping of symptoms, no one can say it is not MS either. So…now that I have experienced 2 similar attacks…I can see a pattern. And again…I know my own body very well…and I am my best advocate. Next time, I will not simply wave away my symptoms, but take earlier steps to try to control them. Another thing is that my inspiration to maintain my exercise regimen is reinforced yet again…my sister told me bluntly that she figures I survived the entire ordeal with spiking blood pressure only because I am in such great shape now. Unfortunately, my mother’s similar MS attack/symptoms killed her instantly. Wow. Fear is a great motivator, ya know? ;-)
On that note, a fairly new song has been resonating with me particularly strongly in the last week as I have been bouncing back from all of this (impersonating Tigger once again ;-). The song is by country singer Gary Allan…and is very poignant. It is so applicable to those of us with challenges in our lives…MS or otherwise. I have included the lyrics below… I hope you find as much meaning in the words as I do.
Life Ain’t Always Beautiful (Lyrics)
Life ain’t always beautiful
Sometimes it’s just plain hard
Life can knock you down, it can break your heart
Life ain’t always beautiful
You think you’re on your way
And it’s just a dead end road at the end of the day
But the struggles make you stronger
And the changes make you wise
And happiness has its own way of takin it’s sweet time
No, life ain’t always beautiful
Tears will fall sometimes
Life ain’t always beautiful
But it’s a beautiful ride
Life ain’t always beautiful
Some days I miss your smile
I get tired of walkin’ all these lonely miles
And I wish for just one minute
I could see your pretty face
Guess I can dream, but life don’t work that way
But the struggles make me stronger
And the changes make me wise
And happiness has its own way of takin it’s sweet time
No, life ain’t always beautiful
But i know i’ll be fine
Hey, life aint always beautiful
But it’s a beautiful ride
What a beautiful ride
Wow – September already! Nights are cooler, days are shorter, and the kids will be heading off to school in a couple of blinks of the eye. (Audible sigh of relief! ;-)
I must apologise to any of you who found my lack of updates over the summer irritating in any way. June was finding me in a bit of a downward spiral – I took most of this summer off from my normal routine, as a much-needed mental and physical break!
My boys and I spent most of July in Alberta and B.C. – staying in serious comfort at my dear sister’s and brother-in-law’s home. My darling sister, without whom I would not be as hale and healthy as I am, ensured that I got the rest and respite I so deperately needed, not letting me lift a finger, and insisting that I heed my body’s signals and actually REST! (What a concept, eh? ;-) Coupling that with good B.C. cherries and my sister’s amazing culinary skills – well, a girl has to feel hale and hearty after such a break!
August was a whirlwind of family visits from Quebec and Alberta, and lots of good food, and lots of new and exciting work on the weather front. And now, here we are, already September!
And bonus of bonuses…I am now within 7 lbs of my goal weight! (These last 10 pounds are proving to be quite the stubborn pounds…much like their owner, eh?) I recently put myself on an herbal detoxification, in order to rid my body of the bloat and such incurred over a summer of over-indulgent eating. What a difference it made – reinforcing yet again that I must really avoid gluten products. Not only do I feel more sluggish when I eat gluten, I now also break out with little patches of exzema here and there. And the bloat comes big-time. Within 36 hours of going on this detox program (which eliminated dairy, sugar, and gluten from my diet) I felt 100 percent better, and my sugar cravings were gone. Now that it is done, I will continue to avoid wheat, though I will re-introduce dairy in a more limited fashion.
In addition to this, I have increased my exercise regimen to include 45-60 minutes of walking (at a brisk pace) 5 days per week (on top of a daily 30 minutes of cardio and 30 minutes of weight ligting), and added yoga at least once per week. The wondrous thing is that the more exercise I add, the more muscle I see, and the more able I am to keep this up, despite a left leg that tends to drop. I guess it really does pay (depending on the symptoms) to use it or lose it. I am grateful that my symptoms are such that I can combat the pain with exercise, and the more efficient I become in that regard, the better I am able to manage my disease as well as maintain the best fitess level of my life. Though, there is definitely a fine line, that if I cross, I pay dearly for, to the tune of being virtually immobile for at least 2 days.
The odd thing though is that despite my high fitness level, simple tasks around the home can cripple me in short time. Case in point: I painted my deck chairs for a couple of hours. No big deal, I thought. Ha! By the end of the two hours, I was exhausted, I could barely move, and was in severe pain. This state lasted for 48 hours before I was able to move relatively normally and begin to bounce back. So, despite it all, my body still has it’s way of saying “You ain’t all that – you still got MS and I can take you down anytime!”
Ah, well…I’m always up for a challenge! As the song says “Life ain’t always beautiful –
But it’s a beautiful ride”!
O…my…gosh…the difference makes me shudder!
My children and I recently found a picture of me shortly before I began my health odyssey into shedding the excess pounds I had put on over the course of my diagnosis. We were all shocked. Quite the eye-opener!!!
As most of my readers will remember, I began my own personal health odyssey back in 2004, determined to regain my health, shed the pounds that were literally killing me, and figure out how to manage my MS. I started with small steps…
This is a picture of me in September 2006. With pounds lost nearing 80, I have not used a cane in over a year. My pain is occasional, rather than daily. Though fatigue remains an issue, pain has become much more manageable. (My constant and loyal companion, Nicky, lies at my feet.)
As you can see by the above pictures, small steps lead to big results! There has been a significant change over the past two years! Has it been easy? No. But neither has it been a grind. While my leg and chest pain is much more manageable and much less frequent, my fatigue continues to be an issue. I am strong-willed and stubborn, and so I make it all work the best way I can, accomodating my body when I must, but pushing myself when I know it is for the best. My lifestyle has changed for the better, with daily exercise having become a mandatory and very welcomed feature in my life. (The exercise endorphins really are addictive, once you set into a new habit!) My eating habits follow more closely to what my body needs, using portion control and avoiding the foods that I know can exascerbate my MS symptoms, or can lead to weight gain for me.
To the date of this writing, I am now within 3-4 pounds of my goal weight. I feel so much better in so many ways, not the least of which is psychologically and emotionally. My ultimate goal was, and continues to be, to ensure I am in the best shape and overall health I can possibly be for the rest of my life, so that I can be around for my children whenever they need me, and be there when they themselves reach their own life milestones. So far, so good!