Glimpse into remedies for autoimmune symptoms PART ONE

I am always on the look out for new ideas, inspirations, plans, techniques and tricks to make a difference to my many and varied symptoms. I get lost reading articles about exciting and interesting topics; I love blogs, books and magazines about well being, food and health. I also am quite open to experimenting and playing trial and error with myself to find out what works best for me.

Today, I will concentrate on what I find helpful when I have symptoms stemming from having an autoimmune disease. Another day, I will write about what I do when I react to foods.

I am currently having regular acupuncture, moxibustion and massage. I guess you do wonder how much it is actually doing but one session a few weeks ago confirmed to me that yes, it is helping! I walked in feeling pretty gross. I was fairly sure I was developing hyperthyroidism again because I was feeling shaky, achy and stiff, light headed and woozy. As I lay on the table with the acupuncture needles, I could actually feel it all easing up. After a gentle massage too I felt so relaxed, and I walked out with only remnants of the feelings I had come in with. It was exciting, and definitely makes the weekly fork out of $150+ seem worthy and justifiable. I have read that other people with thyroid issues get a lot of relief from this type of treatment too, so give a go; it could work for you! Massage is great as it not only eases the stiffness and aches, but it can help with your mind set too. And it doesn't always have to be a paid session with a trained therapist! It is even more soothing when it is a loved one that is massaging you; it provides a feeling of being loved, supported and understood too!

When I am aching and stiff, I do find that heat can help. Sometimes I avoid it, because it can then also make me feel light headed and weak, but when I can manage it, it does ease things up and it takes my mind off the pain. Run a warm bath, use a hot pack or use a warming rub (I was given Zheng Gu Shui sports liniment from my natural therapist).

One of my most hindering symptoms currently is chronic fatigue. Having suffered from fatigue, it is amazing how you come to understand the difference between being tired and being fatigued. My acupuncturist asked me the other day if I had had a bad sleep the night before and I said yes I had, and that I felt quite tired. He then asked if my energy levels were improving any. I said that today I did feel more energised. He clarified with me, "'So you feel sleepy because you did not sleep well, but you feel quite energised today?" It sounded funny and contradicting, but it was a revelation moment, when someone else understood that they are two separate components. Even having been very active all day and feeling exhausted, is a different feeling to that of fatigue.
Chronic fatigue is a nasty, vicious circle. I wake feeling exhausted, so I lay in bed until hunger takes over. I get up and do a few things, and inevitably end up resting on the couch. If I try to live life and do something fun, or do some chores, I am knocked out for the next few days. I crawl into bed exhausted at the granny bedtime of 8 or 9pm. Sometimes, I have the added joy that is insomnia, and lie there, wide awake for up to six frustrating hours.
My fitness is beyond non existent. Which, for someone who used to go to the gym up to 5 times a week, is disheartening to say the least. I know that if I were able to improve my fitness, it would help my overall feeling of health, as I wouldn't be fighting with being out of shape on top of fatigue. The catch 22 problem there is, of course, trying to drag yourself off the couch, when everything feels heavy, and going for a walk (and then, not fainting when on said walk!). When I do manage to go for a walk, or do a yoga or tai chi session, I do feel the benefits. Even if I end up feeling exhausted, it does help me feel a little more invigorated usually, and at the least, it blows a few of the cobwebs away that have gathered from the couch! I am trying to motivate myself to do some gentle form of activity as regularly as possible (or let others motivate me and drag me kicking and screaming off the couch!). I do encourage and recommend that you try to find something that your body will let you do, because every bit counts.

For more tips on relieving symptoms, read on in Part Two of this blog :-)

Glimpse into remedies for autoimmune symptoms PART TWO

Another impeding element for me is regular light headiness and dizziness. Obviously this can be quite dangerous. Along with fatigue, it is one of the main things stopping me currently from working as a nurse. It also means that I do not drive. My feeling of independence is equal to that of a fourteen year old! Not only do I rely on people to shop, cook and clean for me, but I can't even leave the house when I want to! I am so appreciative of the abilities I do have, because there are so many people out there that have so much less than I do. Of course, at 29 years of age however, having experienced independence and self reliance, to find yourself unable to work, drive or do most of the usual things that one does when looking after themselves, it is by no means an easy task to come to a place of acceptance of this situation! In theory, it sounds great to not have to work, or do house work or groceries, or cook dinner. It all adds up though, and those simple things that you take for granted and even begrudge, are groundings to what makes our lives interesting and filled with opportunity.
I am quite good at coping with my light headiness in that a lot of the time, people around me don't even know that I am blacking out. I have dealt with it for as along as I can remember, so I can often keep walking or carrying out what I am doing, while my vision goes black. I know when I am having an episode that requires me to sit, and so far I have not hit the ground that I can remember! (I have certainly come close, and looked like a drunk staggering along, but I have managed to safely get myself down). I do try the usual recommendations: I drink water regularly, I include salt in my diet, I try to not get too hot and I eat regularly. These techniques don't seem to make a huge difference, but then again, without doing it, it all could be a lot worse. Sometimes I have a feeling of ''not being here." It is a peculiar sensation in which my body keeps moving but my mind feels like it has turned off, so for a brief while I feel like I am flying on auto and the pilot has leaped out with the parachute. I find that the only thing I can do when this happens is press my nails into my palms and try to force myself to concentrate on my surroundings, and I eventually come out of it. I have been aware of this feeling since I was a child.
Other solutions to dizziness can include making sure the people with you regularly are aware. It is so helpful when you don't need to make a big deal of what is happening, and you can just nudge someone and they know that you just need some help; they can hold you up and help you to a seat, without a lengthy explanation of what is happening. I also keep an emergency pack of nibbles with me always, and try to have water on standby too.

Another problem when dealing with a long term illness, is cabin fever. Boredom can send you insane!! Sometimes I am struck by the fact I have no idea what I could do with the upcoming hours stretching before me. I am trying to find things that interest me that are within my current physical ability level. I have been attempting to learn more about my digital SLR camera. Upkeep of this blog gives me something to think about. I read as much as I can. My close friends are great; they understand that I can't plan a certain activity on a certain day now, and are always flexible and accepting of a last minute change. They are also willing to sit with me in my couch world if that is all that I am up to.

It is easy to slip into a feeling of missing out and being left out, but I take strength from knowing that I at least have the ability to do some things, and I have supportive family and friends, and I have the financial ability to look after my health as best as possible. Sometimes it feels like I am at a complete dead end, and nothing is happening for me. Lately though, I have started to look at it like this: My life is a blank canvas. I have the ability to start afresh with the knowledge of who and what is important to me and I can paint it with whichever colours I choose.

Glimpse into the new plan and standing up for yourself

Doctors can really mess with your head, can't they?!

After the 4 weeks without medication as planned by the endocrinologist, I was awaiting a definite answer and a structured plan with meds and return to work set out when he rang me on Saturday. Instead, he happily told me that my thyroid hormones are normal at the moment, so he didn't want me on any thyroid meds at the moment, and to regularly monitor my levels from now on. Then, after my prompting, he said I could start the medication to increase my blood pressure as dizziness is still a major issue for me. He wanted to leave it at that! In disbelief, I said that I have been fatigued for two years; something has to be done! He said that as my levels were normal, it wasn't my thyroid causing it. So, as all doctors before him, he hung up having given me no answers and leaving the door open on that frequently mentioned but never answered phrase "something else is going".

I was absolutely devastated because it felt like I was back to square one.

Thankfully, I was able to see my GP on Monday. After feeling so frustrated by him last time I saw him, he turned everything around this time and I left feeling much more hopeful than on Saturday!
He said that autoimmune disease can cause symptoms even though your hormone levels are in the normal range. This makes sense as the antibodies remain no matter what amount of hormone your thyroid is releasing. I may have to live with these symptoms, or we may be able to look at more drastic treatments down the track if the upcoming new medications don't help enough. At the moment, I will monitor my blood levels every two months, and medicate when and if necessary to normalise the levels. I have started this week a medication that will hopefully help with my concentration, brain fog, and possibly my energy levels. Then in a few weeks, I will start the medication to increase my blood pressure. These meds can take a few months to take full effect, so the waiting game continues, but hopefully the gradual improvements will start soon. I already take quite a few supplements too that hopefully help given my restricted diet. Then there may be more tests to look for the "something else" to explain the chronic fatigue syndrome. At this point, it doesn't look possible for my return to work for a few more months.

As a patient, you really do have to keep pushing and pushing. As much as doctors want to help, they have time limits and busy work loads, they're tired, and they don't see you in your day to day life. It really is up to you to keep going, and to stand up for yourself and fight to be seen. My advice is to keep all records of results and plans, and keep up to date with all that is going on, and read as much as possible about your conditions and medications. You are the best person to advocate for you! (and supportive family members are good too!)

So the waiting game continues, but now I have some hope that these medications will help to some degree, which after weeks of incorrect medication or none at all, that is something to hold on to. Come on body, let's do this thing!


"It's ok not to be ok, as long as you're not giving up."