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!

Glimpse into the road to diagnosis

Written 17/01/2013

I have been thinking today about how important it is to keep pushing for answers when you know something is wrong in your body, despite being told you're healthy.

I went from doctor to doctor and had test after test for years, and everything kept coming back normal. Each doctor would eventually shrug their shoulders, tell me nothing life threatening or major was going on, and show me the door. I started to think that I was being overly dramatic, that I must be a hypochondriac and that I just had to push through and get over it. So, feeling like death warmed up, I would battle my way through shifts at work, I would struggle around the grocery store, I would do the house work and cook dinners feeling like I'd collapse any second, and I'd fight to have a social life too.

In hindsight, that is just ridiculous! Before the food intolerances were picked up, I would get pain so bad that I would be bent double in the street and my partner would have to hold me up. I would get to work and faint within an hour and be sent home. I would be so unwell that I would struggle to absorb any food for days at a time. Even since I have had my diet sorted, my energy levels have been non existent, the dizziness continues on a regular basis, my muscles and joints ache and feel stiff, and I only occasionally get a day of feeling good. I can't believe that doctors can just send you on your way and make you feel like it is all in your head when you are that unwell on such a regular basis! When I finally got a diagnosis, it was like I'd smashed through a wall and I could yell, I'm not crazy, see?!!

Doctors can't know everything. You have to keep at it and keep at it until you walk into a room with someone who will crack the mystery. It won't necessarily mean everything will be solved (I definitely have a long way still to go), but you can get there! Things can get better.

Glimpse into the waiting game

Written 16/01/2013

Time is just plodding along at the moment.

I am not working. I rarely leave the house. Apart from a couple of friends, my main points of human contact are with my parents (who are indeed awesome human contacts!). If I do find the motivation and energy to do something for an hour or two, like bake an easy cake, or have a cuppa with a friend at a cafe, then I am tired and need to rest for a big chunk of the day, and sometimes the next.

Every facet of my life seems to be on hold, waiting for the next move.

It is a vicious circle. Not enough energy to do much....don't do anything....lose motivation to try to do anything...don't do anything....rest, lose fitness, lose energy....don't do anything.

However, as I have said before, I have decided to be positive and look to the upside of things. So though I write these things while I feel tired, and lonely and bored, I am still holding out hope for a change soon, and I will make the clouds part in a few minutes and be happy for the day.

What are the upsides?.....
**I am not overweight! Luckily, I am not one of the people with thyroid issues who have weight gain problems. When I was thyrotoxic a month or so ago, I lost a few kilos too, so now I am classed as underweight according to the BMI index. This means, although taking into account my very strict diet due to food intolerances, I can have a daily dose of treats! I just ate hash browns and sausages for breaky, and at some point soon I will have a slice of the cake I made yesterday! Guilt free! (And I have low cholesterol and low blood pressure, so bring on the yummy stuff!).

**Massages! I have decided to try and have regular massages. My first one was on Monday and it was deep, and painful, but good!! I haven't decided how regularly I will do it, but it is something that will help, I feel.

** Although I get very bored, I should enjoy the fact that I am not rushing, and stressed and caught up in the fast pace of work and general day to day living. I know when you're at work, you can't think of anything better you'd rather do than relax on the couch with a book! It isn't the same after two months of it, and countless tv shows, audiobooks, magazines and hours of web surfing, but I know I should appreciate the down time (however enforced and undesired it is!!).

I have an appointment with a natural therapy practitioner today. I have been trying to decide whether to cancel but I think I will go. Although I dread repeating my story and getting nowhere, the possibility of someone else's views and thoughts developing a new idea that might help is too intriguing to avoid. Basically I am just hoping for some new physical therapy ideas, like particular massage types and acupuncture. I don't want to start any herbal medicines at the moment, because I am waiting to see the endocrinologist. I have tried the natural therapy route with two clinics before, so hopefully, now actually knowing about the Hashimoto's and food intolerances, this one will come up with something ground breaking! (Well, I'd be happy with just ground trembling!).

Glimpse into perservering

Written 15/1/2013

Yesterday was finally massage day! Unfortunately I couldn't book in while I was really sore a week or so ago, but I still am aching so every bit helps. It was definitely not a feel good, relaxation massage! It was a try and not jump off the bed massage! However it seems to have got into some tight muscles and today I feel achey but looser. Tomorrow I am going back and talking to the clinic's practitioner for a more holistic approach and see if any new suggestions can be made. Yes, unfortunately this means recounting my whole story again, but hopefully something good comes of it.
I finally got a referral to see an endocrinologist on Friday. I had to go back to the GP for the third time in the week just to get it, but I eventually got there, after really having to push to get it (very frustrating and confusing that you have to ask several times and finally be very blunt and forceful to get a specialist referral!). I was starting to feel like my GP, although very clever and is the only one to have picked up the Hashi's after however many years, is starting to mismanage me, and I feel like we aren't getting anywhere. So much I have read from medical practitioners and from patients says how GPs, and even specialists so often don't handle Hashimoto's patients well and that you really need to keep pushing to get the treatment you need. Because my hormone levels have started to normalise this week, my GP is just keeping me on the Carbimazole and not actually treating the problem! He actually said that we wouldn't look at the antibodies anymore! If my hormone levels are ok at the moment and I still feel bad, then something else needs to be done! So many people seem to have this same problem; doctors look at the numbers on the blood reports, and don't take into account the actual symptoms. Fingers crossed that the specialist is good and gets me on to the right path!