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!

Glimpse into hang in there

Written 9/1/2013

It was blood test day on Friday and then back to the doc on Monday. Things are still going very slowly. I have had to confirm more time off from work as my body is still aching, tired, weak, my gut is playing up and my brain is still dizzy, thick and cloudy.
It seems so crazy when you and your family think you have had a good day when you have been able to sit on the couch for a few hours and be on the computer, go for a 5 minute walk in the park, and chat at dinner time!! The past few days have been better than last week in that I am actually leaving my bed, but at 28 years old, I am craving the ability to do a gym class, or go to work, or go catch up with friends without stressing that I will land in a heap!!!! I think it is probably frustrating this week because there is no change in the plan with meds or anything...just keep plodding on.
However, my parents are amazing. They pull me through. My other family members keep me going from afar overseas. Friends tell me to keep going too. And I keep thinking this week, I don't have a life threatening illness. It is really frustrating at the moment, and maybe it will be for a while, but even though I can't do everything I want to do, there is hope one day that I will be able to, and I have so much love from people sent my way that I am planning to enjoy what I have, and not dwell on what I don't have.

I watched the movie 50/50 this week. It is about a young man with cancer, and I found it a really good thing for me to watch. Not only is it funny and well told/acted, it shows the frustrations of someone who is sick, how people around that person can help and how it is hard for those people too. Lots of laughs and motivation!

Glimpse into advice, love and support

I have received some great advice and support in reaction to setting up this blog. I thought I'd share some of the thoughts people have shared. I have only used comments people made public on facebook or this blog; I have not posted privately sent messages.

• I don't have the food intolerances but absolutely feel your pain with Hashimoto's. It took multiple times of months off work and getting to know how my body coped with it to get my head around it all. I hope writing your blog helps you as much as others x

• Seeing an endocrinologist who had a better understanding of the ideal blood levels (lower end of normal) was great. Apparently people can be walking around 10 times more out of range than me but I'd end up bed ridden not that far out...took my GP a while to accept it I think but now it's fine. My dose took a lot of tweaking and is a bit odd but I got there. Do your own reading and trust your instincts..even when you're sleeping 20 hours a day lol

• The first bout I was off for 3 months, then again for 2 so I had drained all my sick leave and ended up using some long service leave. Miserable!! I was always thankful I didn't have the weight gain or a hideous goitre lol. The fatigue is crazy and having to ask for so much help from others was really difficult when you are so used to being independent. (My son) was in early primary school at the time. It is a massive mental adjustment when you can't see the end it sight. I was forever grateful to those around me for their love and help - embrace what ever is offered!

• Great idea! I think it will be therapeutic for you and also great for the people around you to have a better understanding of what you are going through.

• Geez, that's full-on. when were you diagnosed, and are you happy with your endocrinologist?
• I have hashimotos! It was diagnosed in 2002 after over 12 months of massive weight gain and being told "you're a new mum, it is normal to be tired". At that stage I was needing over 14 hours sleep a day! If only they had just done a blood test earlier! It has taken forever to lose the weight and even after all these years, my levels are still all over the place. I'm currently on 200mcg oroxine per day. It is very frustrating! Good on you for setting up a blog!
• Check out your Super, you may qualify for income protection if you are running out of leave. QSuper pays 75% of your wage for up to two years.
• After reading your blog, I feel so greatful for my health & shouldn't take it for granted. I can't believe how you've been dealt a lousy card & hope that your levels stabilize asap & stay that way. Take care xx
• Geez sounds like it is absolutely knocking you for 6. :( You should definitely get onto an endo though ASAP... will be probably a 3mth wait to get in but it is their area of expertise. I have one or two names that are excellent. Even though there are great GP's out there, it might be a bit complex for them to totally understand but more likely they may not know the full spectrum of effects, treatments and interactions (e.g. with pituatary). Do it!! :D
• I basically went through 4 GP's, a neuro, an endo and then another neuro to get a diagnosis that made some sense and could be tested. Something totally different but you learn to challenge GP's, learn about the systems in the body and learn about how symptoms can lead you down a particular path... And sometimes you just need to be sitting in front of the right professional. Good luck, keep at it and keep positive!
• Although its early days, I would really encourage you to see an Endocrinologist...given you have other health issues, are so young and are pre-babies. After my second blow out I asked my GP for a referral even though i was afraid of offending her! I only had to see the Endo once but would have to have gone back if I had more babies. They also screened me for a whole range of auto immune diseases..once you have one you have a greater chance of others. Maybe you could just ask your GP what they think and when the timing seems right :)

• I feel very lucky as my Hashi's never ran my health off into a ditch. Hang in there! It can only improve right!! Xox

• This blog is a brilliant idea, you will have so much support and information from fellow sufferers , a very positive move . Well done you ....xxxx

• Reading your blog... You are an amazing and strong person and I hope the new year will be much much better for you xo

• Hey, great blog... though I'm so sorry to hear about the awful things you've been going through. I was diagnosed as a celiac about 10 years ago and food intolerances are no fun. I can't even imagine how difficult it must be dealing with everything. Stay strong and if you ever feel like a chat or whatever, shoot me a message :) x

• Sounds like a great idea to blog about and very inspirational for others like myself, who would have no idea about such a disease. Best wishes for good health, a great blog and for the treatment to work!

• Hey, just read ur blog about Hashimoto's. Glad u finally have a diagnosis but sucks its Hashimoto's. It can be a hard roller coaster to ride but hopefully your endocrinologist can get better control of your levels so you can regain some level of normality. Take care, rest up and know we're thinking of you! Hope u feel better soon!

• Hey, hows everything going, I hope you are starting to feel better, havent seen you for ages, and saw you now have a diagnosis, just want you to feel better, its been hard for you being ill for so long, I hope now they may be able to help you get back to your vibrant self xxxx

• Well written way of describing Hashimoto's ... I was diagnosed with Hashimoto's in 2006 and it was hell. Slowly killed my thyroid so now it doesn't do anything at all anymore but at least it's no longer a roller coaster. Hopefully now you know it's Hashimoto's they can control it for you so the roller coaster isn't as horrid! Take care!!
• I hope 2013 brings u better health, happy new year to u
• Happy New Year, may the fairies bring you good health in 2013 ....if it's any consolation we'll be asleep by 2200 as well xx

• Crossing fingers toes and endocrines and enzymes for you to get well in the new year xxxx

• Hope the new year brings improvements for you. Keep fighting the good fight. Happy New Year and goodnight x
• Hang in there...amazing things can happen as your body heals :)

Glimpsing hang in there

It was blood test day on Friday and then back to the doc on Monday. Things are still going very slowly. I have had to confirm more time off from work as my body is still aching, tired, weak, my gut is playing up and my brain is still dizzy, thick and cloudy. 

It seems so crazy when you and your family think you have had a good day when you have been able to sit on the couch for a few hours and be on the computer, go for a 5 minute walk in the park, and chat at dinner time!! The past few days have been better than last week in that I am actually leaving my bed, but at 28 years old, I am craving the ability to do a gym class, or go to work, or go catch up with friends without stressing that I will land in a heap!!!! I think it is probably frustrating this week because there is no change in the plan with meds or anything...just keep plodding on. 

However, my parents are amazing. They pull me through. My other family members keep me going from afar overseas. Friends tell me to keep going too. And I keep thinking this week, I don't have a life threatening illness. It is really frustrating at the moment, and maybe it will be for a while, but even though I can't do everything I want to do, there is hope one day that I will be able to, and I have so much love from people sent my way that I am planning to enjoy what I have, and not dwell on what I don't have.

I watched the movie 50/50 this week. It is about a young man with cancer, and I found it a really good thing for me to watch. Not only is it funny and well told/acted, it shows the frustrations of someone who is sick, how people around that person can help and how it is hard for those people too. Lots of laughs and motivation!

 

Glimpse into supporting the loved ones who are supporting you

I have written about how loved ones can support someone who is sick; a vital aspect in your recovery. Today I want to write about how the one who is sick can help those people who are providing the support.
I find that it is easy to fall into the trap of self pity, and who wants to be around a self pitying sack of bones?! Yes, maybe every inch of your body is hurting, your heart is pounding, your head is spinning, you feel like your lunch may reappear, and at any moment your whole abdomen will cave in on itself in a volcano-like erruption! Sure, I think most people would agree, this feeling would justify ripping someone's head off because they don't do what you want!! But is that really going to help?! Because, that is only going to make them walk off in a huff, and you are left feeling like the lava is errupting all by yourself. Not helpful. Lava errupting from your abdomen is definetly something you want to go through with someone else!!
Does anyone know any good techniques to get through these situations? Unfortunately, making all those around you into mind readers is not an option.
I am trying to remember to take a breath, to have a quick chat to myself, and remind myself they are trying to help and that even though it is going to take a lot of energy to summon the words to explain what you want, it is going to be a lot easier than trying to apologise later. And not even that; why is it fair to make someone you love feel like crap because you feel like a live volcano. (Sure, easier said than done!).
Someone I know who has a long term illness, takes this approach. She gives herself an allotted time period to feel self pity, sadness, anger, and frustration. She lets herself dwell and be indulgent in the feeling. And then she stops, and she gets on with life. I am always in awe of this, but if you can practise this, then it is really a good way to deal with it. You can't stop those feelings completely; that is not healthy either, so by letting yourself have them and then taking a breath and getting on with things, is going to make you feel a bit stronger.
Helping those people understand what you feel is also another thing I think will help. I know if I wasn't going through this, I would not understand the feeling of having absolutely no energy. I don't mean, gee I am tired, I have not stopped all day kind of no energy. I mean the kind of no energy that means even lying down you feel exhausted; that just rolling over in your bed needs determination. So sometimes, words are even a hassle. Even experiencing it, I am surprised sometimes. The effort required to do the most basic things can be massive. When your brain is churning and it is hard to follow a conversation, it is so difficult to put the words together to explain something, or to talk nicely to someone!
Let people understand the feeling of frustration and disapointment you feel about being in this siutation too. When you feel sad that you can't go out to a party or a dinner invite because you feel too sick, then you need to talk to someone about how that makes you feel, and that you would really like some company to make up for it (instead of saying nothing and then feeling angry that they went out and left you alone). Sure, there needs to be something from their end too, as it isn't your fault you are sick and they need to think about sacrifising a little so that you can be a little happier (and then you will be nicer and then they will be happier too!!).
Another thing that I think is important is to give as much as you can on your good days. Don't over do it and wipe yourself out of course, but if you get a good day, or a few hours or even a twenty minute slot when you feel a bit more reasonable, then have a nice chat where you can be focused on the other person, or give lots of smiles, or go out and do something. Whether this is with your partner, your family or with friends, they will appreciate seeing the real you, and you will feel good for it too. Take advantage of the good moments and not just for your benefit but for them too.
Obviously, these suggestions are easier said than put into practise. But by not taking the people who are supporting you into account, the fall out can be monumental, and can affect your health too. They are your partner/family/friends because you love them and they love you; ultimately you all need to remember that and not let any illness beat that.

Glimpse into supporting your unwell loved ones

When you are sick for a long time, you are subject to such a wide range of reactions from people.

Over the years, I have had countless hours of sick leave, including having to leave shifts early. My fellow employees and employers have always been amazing though. They are so understanding and helpful, even when I didn't know what was making me unwell; I guess that is the upside of working in the health profession.

People who say "it is ok, you'll be right", think they are being supportive, but when you feel like death warmed up, have missed weeks of work and haven't done a fun, social outing for months, it is beyond frustrating and blood boiling to hear! Whether this is based on their experience of thyroid conditions through friends or family (possibly not even Hashimoto's), or they make this observation with no knowledge or experience whatsoever of what you are going through, or even if they themselves have Hashimoto's, it can be so upsetting. If they are one of the lucky ones who, although they may have suffered from the effects of Hashimoto's, now take medication and have had no issues getting the correct dose, then they don't understand what it is like to feel the frustration and be on the roller coaster of trying to find treatment. I in no way resent them for this; I am so happy for them that they don't feel this frustration; that they have been so lucky to get on top of it, but they definitely aren't helping you with their comments!

You also get people who are amazing; who help you with all the little things that seem like nothing when you're well, but are massive feats of endurance when you are unwell. Someone who empties the dishwasher for you is an angel in disguise. A visitor who drops in, makes you a cuppa and sits on the couch with you for a chat and then leaves before you need to say you need to sleep is an unbelievable contribution to your sanity! Even a text to see how are you, or an offer to pick you up and take you to their couch for a change of scenery is unforgettable. The little things are definitely the most important. Support your unwell loved one by thinking about the things they need so they don't have to ask.

I have found that the loss of independence impacts on your life so much. I can't drive at the moment because I have been too dizzy and lethargic. This means that I spend so much time indoors, often alone. It means things like getting groceries and seeing other people are hard (these type of things are also affected in that I struggle to actually do groceries etc).
It also means that you are always asking for help, which can be bad for your self esteem, and your happiness. I have had several issues with people wanting me to tell them how I want them to help and what I want them to do. That makes you feel like they don't really want to help because if they had no issue then surely they would just skip their dinner out to sit with you while you're in pain, or they would just go out and get you food if they can see that the fridge is empty. So then you say don't worry about it, and then end up lonely and hungry!! So the key is, please remember the little things when you know someone who is unwell!

Glimpse into Thursday January 3rd 2012

I have been MIA the past few days from the blog because for the past week, the pain and stiffness in my shoulders, back and hips have been overwhelming. I have barely moved from the couch or bed. That coupled with feeling flat and tired, hasn't enabled motivation to sit in front of a computer!!
When I have ventured from the comfort of lying down, after about half an hour of even the mildest strolling, and I feel dizzy, sore and exhausted and have to go back to bed to sleep!
I am finding that over the past two months of being more unwell than I have been before, one or two symptoms seem to become exasperated for a week or two, and then settle into the background (still present but not as overwhelming), and something else comes to the forground. Has anyone else experienced this? The severe fatigue has basically been the same the whole time, and then dizziness, digestive problems, and pain seem to alternate between being the killer problem on top of it!
I think I have come to the point where I am going to invest in regular massage and/or accupuncture. When you get to the point that you can barely pull your arms over to your feet to rub them while they ache because your back is hurting so much, I think maybe that is the time to forget the expense, and make a positive well being decision! I have found a clinic in Paddington that seem to look at the whole person and use various therapies to improve issues, so when they open after holidays next week, I will book in. I will let you know how it goes!
I am realising this might be more of a long term haul than I first thought. I keep looking to my next work shift and think, right I have this many days to get on top of this and get back to work. And then that day sneaks up and I have no ability to even contemplate work and have to pull out. This not only stresses me thinking about letting work down, but also adds weight to the old shoulders thinking about money. It is a nasty circle! I had some good news about income protection yesterday though, so hopefully in a few weeks I might have some assistance there. If anyone out there has similiar issues, I highly recommend speaking to your super fund asap and see what you're covered for.
Today the pain is subsiding a little, and so here I sit at my computer, watching the cricket. My best friend visited me yesterday; she always makes me laugh and feel happy. Another good friend might be dropping in this afternoon. It makes such a difference when you have just a little thing to look forward to. It makes the effort of getting up out of bed worth it.