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."

A glimpse into being in my shoes

This morning, after reading tweets written by other people with long term illnesses, I read again the story of "The Spoon Theory." This is a well written explanation of what it is like to not have a body that is firing on all cylinders. You can find the story here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Even the people who spend a lot of time with me, do not understand what it is truly like to live with an illness that robs you of your true capability. They try to, they think they do, but ultimately they let you down when they expect more from you than you can physically give, and then feel disappointed or hurt by you because you can not give it, when you are just trying your best. I think my mum is really the only person who comes close to truly getting it, without actually going through it herself.
I don't want to use excuses. I want to increase people's awareness of these issues, so there is a better understanding. I have it so much better than a lot of people by far, and I do count my blessings. I do understand the struggle however, and I want to improve people's knowledge of the subject.

As the spoon theory lays out, when you have limited energy reserves, and issues such as pain and dizziness are a frequent occurrence, you have to choose which battles to fight. Sometimes, I will have a shower and it will make me feel better. But a lot of the time, the simple process of getting ready in the morning is so exhausting, that by the time I am ready to leave the house, I could do with a nap! Sometimes, I choose to do something slightly physical, like go to the shops, or do a photography workshop for a few hours. These tasks are gentle, and involve only slow walking, and can even be broken up with regular breaks. However, they completely drain me. I have to choose to do something like that, knowing that I will be physically and mentally spent by the end. I would rather do that than always rest and do nothing; I want to get out there and live! But the thing that disappoints people, is you do something like that, and then they want you to keep giving more, and you can't. Every bone in my body comes to feel like lumps of hot and heavy stone, and I can barely keep my eyes open, and the dizziness and nausea set in, and as much as I would absolutely love to keep going, the only option is to sleep. I get frustrated by this, but I can feel it, so I know I just have to give into it. People who can't feel it, try as they might, don't know why you can't just push a little more, because their bodies allow them to.

It took me a really long time to learn to give into it. When doctors kept telling me there was nothing wrong, I kept pushing myself. So many days at work, I felt like I had to just concentrate on getting through. That upsets me because I couldn't give my best. Trips to the grocery store were usually a downright horrible experience, and then going home to cook dinner every night was a nightmare! By the end of night, I felt absolutely broken. But then people expect you to keep giving, so you can't stop.

Now that I have been told there is something going on with my body, I have been able to ease off myself a little. I am getting better at accepting help, and asking for it. I am better at saying no, I can not do it. I am better at knowing I need to rest, and fitting it into my day.

What would help now would be more people who understand that just because I can't, it doesn't mean I don't want to. More people who understand that I am trying my absolute best, and yes, it isn't equal to what other people can give at their best, and yes it doesn't fit into what people normally do at my age, but it is my current best. So many people have moved out of my life because I can't keep up with them or give them what they want; you definitely learn who you're true friends are when you decline social offers and the like, and then never hear from them again! This time in my life is bloody hard, and I just don't need people giving up on me; it makes me weaker and the struggle is so much harder. People in my situation come to rely on other people, and when that network gets smaller, although it leaves you with the people you can really trust and count on, it makes you feel insignificant, misunderstood, let down and thrown aside. I am a very forgiving person though! I do understand how it would feel for other people, and I would forgive and welcome them back into my life!!

I am (hopefully!) getting really close to finding a solution to my health problems. I am confident that soon I will be more of the me that I used to be. I really hope so. I will have gone through this, and learnt so much. Who is important to me, who I am important to, what my goals are for my life, where my strength comes from. So many people do not have the prospect of getting better, and their motivation to keep going is truly inspiring. Everyone can help eachother, with a little trust and understanding, with love and support, everyone can keep people who are struggling going.

Glimpse into a brief update

The next few days make up the last of my month with no meds, and then I get bloods taken...again. I am starting to get apprehensive about what the doctor will say, because of the niggling worry that this next step may not work either. I am interested to hear whether I have Hashimoto's or Graves' though, and I am keen to try out medications that suit. I really, really need to see some improvement soon. I will never give up, but something good needs to happen for me sometime soon! It feels like a never ending battle that is in slow motion. I am stuck in a repetitive cycle of resting, trying to do something, becoming exhausted, resting... Everything that is important to me has been effected because of all these stupid health problems. It can't be said that I lack motivation to get better!!

"To keep the body in good health is a duty...otherwise we shall not be able to keep our mind strong and clear." -Buddha.

Glimpse into the specialist appointment

I haven't written for a while. Basically, I was a little lost for words after my specialist appointment!! But today I find myself lying on the bed feeling pretty gross, reading motivational articles, books and blogs about good health, clean eating and wellness, and I feel inspired to find those words!

The much anticipated and nerve wracking specialist appointment was for the most part worthwhile and helpful. The doctor was very keen to listen and help, and although not that much older than me he seemed to know his stuff (though I do have to remember I am getting old and having a doctor my age is more likely now!). I do feel frustrated because he said he doesn't think all my symptoms are from the autoimmune disease, so yet again another doctor raises the possibility of something else going on, but can't bring an answer with that suggestion! My blood boils when I hear a doctor say "something else is going" because it is never followed by "and that something else is...."!

He did a thorough examination, and listened to my lengthy list of symptoms. Much to my relief he has ruled out arthritis or other autoimmune joint related disorders, which I was concerned I was developing.

He wants to improve my dizziness and light headeness, which is such an issue for me. Over the years, doctors have mentioned the availability of drugs to improve my low blood pressure to help this (I generally sit on a BP of about 90/60mmHg, and drop to a systolic pressure of about 80 or lower when I stand, which makes for staying upright or seeing through black vision a tad interesting!!). So he has suggested starting Fludrocortisone, which is a steroid that causes fluid and salt retention so as to increase the blood pressure, and hopefully result in more upright-ness and less starry vision!! (though maybe I will become a big puffy ball of oedema! Attractive!). It seems like a fairly hardcore drug with many potential side effects, but I think I have decided that I will give it a go, taking in the fact that being light headed and dizzy has caused me to leave work countless times over the years, and is the main reason I haven't driven for the past 3 months.

The part of the consultation that left me speechless was the bit where he suggested I may have Grave's Disease, not Hashimoto's disease!! This is the same as Hashimoto's in that it is an autoimmune disease that attacks the thyroid, but it causes too much thyroid hormone production, as opposed to too little. I had queried this myself in my weeks of reading, but I don't fit some of the symptoms, and in trusting my GP, I had discounted it. (But I don't fit all the Hashimoto's symptoms either, and most patients rarely fit all the symptoms on a list). It turns out that I was right to fight for a specialist appointment, because a test to check for Grave's disease, that could have easily been done during the multiple blood tests I have had done, hasn't been done!!
So, just in case I hadn't been frustrated enough by the painfully slow progress so far, I have been taken off the carbizamole for a month to see what happens!! So another 4 weeks of getting nowhere, and potentially getting unwell again (how does one look forward to a month like that?!). At the end of the month, I will have more blood tests to reveal whether I do have Grave's, or to confirm the Hashimoto's diagnosis, and then we will decided whether I need Carbizamole or Thyroid Hormone replacement. Comical really! I remember my GP saying, "you have an autoimmune disease that is affecting your thyroid. We will call it Hashimoto's; it could be something else, but we will call it Hashimoto's'.''!!!! Excuse me, if there was a test to decide whether it is Hashimoto's or Grave's, why didn't we do it?! Ok, rant over ;-)
Fortuntately, I haven't got suddenly and severly unwell like the first time I came off the Carbizamole. However, I have slowly developed more symptoms or had symptoms increase in intensity in the past 2 weeks that I had less of on the Carbizamole, such as a pounding and racing heart, nausea, a sensitive stomach, weakness and lack of stamina, light headedness and today's new sensation of too much blood in my eyes, as if I am hanging upside down! I have my fingers and toes crossed that I am not developing hyperthryoidism again, but I have to look at it positively that it is more controlled this time and if it happens, at least we will know why.

I am so glad that I stood up to my GP and requested a specialist appointment despite his adamant determination to keep me on. GPs do a fantastic job, particularly my GP who was the first person to look at my symptoms from a different angle and discovered the autoimmune disease, but they might miss something in the more specific areas (it would be impossible to even contemplate that they would know everything about everything!). I am so glad I had people encouraging me to push for it.

Unfortunatately when I have a good day and do a few things, it is inevitably followed up with a day feeling wiped out and miserable (an indication that work would just about kill me at the moment! It definetly got close to doing so for most of 2012!). Yesterday I managed a nice day out with Mum, and even though we took it very easy and had lots of rests and cups of tea, today I feel like even sitting up is too uncomfortable. So I have resigned to my comfy bed with a relaxing playlist on my iPad, an array of books, including the new ''I Quit Sugar" by Sarah Wilson and I feel a nap coming on! (Sarah Wilson is my inspiration as she avoids fructose like me, and she has autoimmune disease too -she has had Grave's and now has Hashimoto's, yet she has it controlled and is for the most part healthy and leads a busy life!).
So I will finish up now, but will aim to update with some new recipes etc soon!

Glimpse into a motivating perspective

I began having minor symptoms of a misbehaving body towards the end of my teens (although I had spent my entire childhood and teens picking up every bug and infection, and Mum always thought something wasn't quite right with me). These symptoms didn't overly affect my life, apart from frequent colds and infections meaning I would cancel on some social events, and miss uni from time to time. However, on the whole, I remember being happy with my body. I would think how my body would put up with anything I did to it when Mum would complain about reactions to face creams and makeup. I noticed that if I put a kilo or two on after a couple weeks of holidaying gluttony, I would quickly and easily lose it when I went back to being healthy. Although I had eye bad sight and a weak ankle, my dodgy immune system was my only real issue, but I got used to it (an immune system which, til my mid twenties seemed weak against any enemy, has now turned on me and is attacking me!!).

Since I started experiencing more severe and frequent symptoms about 4-5 years ago (which then really hit hard in the past 2.5 years), my life seems to have become just about being sick. Up until my mid twenties, I was really happy with what I had done with my life thus far. When I had finished school, I travelled for a year, and then I went to uni. I worked for two years and then travelled, lived and worked overseas. Then after meeting my partner from Adelaide, I moved there for 1.5 years and experienced living and working in a different Australian city. I felt I had done a fair bit for a 26 year old!
But now, almost 3 years later, apart from a bit of travel, I feel like I have just plodded along. I am in the same job and position I was in prior to leaving for overseas, I barely do any of the fun, social events I used to love, I am not married, or starting to have kids, or studying new courses, or travelling the world, or anything I thought I would be doing by the time I was getting closer to 30! That is just not me! I am enthusiastic, and keen to learn and experience new things, I want to start a family, I love to have fun, and take on new responsibilities and make the most of life!!

Being unwell so frequently really does impact on you so much. It can be quite upsetting, frustrating and disheartening. My support network is really my saving grace. I have had so much help and understanding and love from so many people, that I can't imagine giving up and not trying to get to all those things I crave to do eventually.

Although it seems bleak sometimes, it is really a driving and motivating factor. I am off work at the moment for quite some time because of my health, but I am making the most of this time to do the little things that could help in some way to improve things (eating healthily, having accupuncture and massage, resting etc. I may even start yoga soon!). One thing that having a dodgy body teaches you is to fight for the things you really want. I am determined to do everything I can do to look after my body, and to seek out any medical help and advice that can change things. I know I can get back on track, and when I do, it will make all the things I want to do that much better when I do do them! I think I will become a gym junkie for a start!