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.

Glimpsing support

I have had such an amazing response already from starting this blog!! So much inspiration, advice, information and support already! Thank you! I hope we can all help each other :-)

Glimpse into your loved one's Hashimoto's disease

Hello there,

My name is Hashimoto's disease, and your loved one is my host. She does me well. When I attack her thyroid and she produces too much hormone, I feed on her. I drain the energy from her, I make her feel anxious and jittery, and just for thrills, I make her dizzy and I upset her stomach. I make her muscles ache all over, I make it hard for her to move. I make her eyes blurry, and I stop her from having any fun with friends. And then when she runs out of hormone, well I don't like that, so I make her feel flat, and tired, and sad. She struggles to get out of bed, and if she manages that, I make her feel so weak and nauseous that she can't go to work. I enjoy what I do; one week I attack, another I rest; it is fun to watch her on the roller coaster.

You know that time she was crying in pain and sadness, and you left her to go to your dinner with friends thinking "she can manage, she does it all the time"? Well thanks buddy! You weakened her strength against me and helped me get a stronger foothold on her; it was just what I needed!

Remember that time she yelled at you just because your hand got in the way when she was trying to pick up those books that had fallen over? Well that wasn't her, no you fool, that was me! I was churning up her head so it was so thick and muddy it was like a mouldy fish pond. It was so hard for her to concentrate on picking up the books, that your hand just made her crazy!

And all those times she can't decide something, and just wants you to take control? Yep, me again! Her body is so tired and achey, her heart is thumping, her mind so foggy and dizzy, and her limbs so shaky, that she can't make decisions! How lame do you think I am?! She would have to be superhuman to fight through all that and give you the decisions you want!

So next time, you think it is her being angry at you and walking twenty steps behind you, please think of me! Give me the credit! I am the one who is making it hard for her to keep up with you! I am the one who is making it impossible for her to smile at you! I am the one that makes her say no to all those social occasions, and yet her friends continue to fall for it and end their friendships with her because she never comes out! I am fed up with not getting the appreciation that I deserve.

Thank you for your time. Maybe one day, I will come and visit you, and you can be my host.

Love and kisses from Hashi, your loved one's Hashimoto's disease.

Glimpse into Hashimoto's disease

I have Hashimoto's disease. This is an autoimmune disease, which means that my body is attacking itself.
For an unknown reason, I have a high level of antibodies in my blood. This could be because I have had many viruses and illnesses in the past, but even with modern science, it will probably always be a mystery to me. Many things can trigger Hashimoto's disease, and one thing is said to be food intolerances. I have struggled with increasingly worsening undiagnosed food intolerances for at least ten years. My gut was badly damaged and my adrenal gland's ability to produce the correct cortisol levels was effected before I discovered my severe gastro symptoms were caused by a wide range of food intolerances. So in my case, food intolerances could well be the reason for the development of Hashimoto's.
When I was first diagnosed with Hashimoto's two months ago, my level of antibodies was 2000. It is meant to be less than 60. Four days ago, it was 2700 (Needless to say, I am currently not feeling well!).
When I am having a Hashimoto's attack, and my antibodies increase, my body becomes confused and in trying to protect me from an outside intruder, thinks the cells that make up my thyroid are what it needs to attack. Subsequently, my thyroid tissue is slowly killed off, and my thyroid overproduces thyroid hormone in its distress. This causes me to be in a state of hyperthyroidism, causing symptoms such as nausea, muscles aches and pains, dizziness, light headedness, a vertigo like sensation, anxiety, foggy brain, memory loss and confusion, shakiness, blurry vision, a fast heart rate, extreme fatigue, an upset stomach, loss of appetite, severe insomnia, weight loss; generally feeling horrible and miserable!
Eventually, someone with Hashimoto's can get to a stage where the thyroid can not produce any more hormone, so then you sit in a state of hypothyroidism. Due to past symptoms, I can probably say I have been in this state, but as yet blood tests have not caught this stage since my diagnosis. I am currently on Carbimazole, a medication which stops my thyroid producing its own hormone so as it bring me down from hyperthyroidism (for the second time in two months!), it is possible to go hypo and I have to monitor for this. Symptoms can be severe fatigue, depression, weight gain, swelling, muscle aches etc.
Hashimoto's disease differs from other thyroid conditions. Ultimately it is an autoimmune disease which by chance choses the thyroid to attack (Grave's disease is another autoimmune disease which happens to attack the thyroid). Hyperthyroidism and hypothyroidism can be caused due to faults and damage to the thyroid. These can be treated by medication and apparently have a good success rate. (Some conditions result in the need for surgery though so they are by no means a walk in the park!). I wish I had been warned that treating Hashimoto's is different and can be difficult. My family and I heard "thyroid" and thought, based on experiences of several friends, it would be easily fixed. My doctor did mention, almost in passing, that the rule of thirds was relevant; one third of people treated feel a lot better, a third feel a bit better and a third don't feel better. However I wish he had given me more of a black and white warning. After years of doctor's shrugging their shoulders at you, you hear a diagnosis and think, this is it, I can be fixed.
The reason Hashimoto's can be difficult to treat is because of the fluctuating levels of hormones due to the attacks on the thyroid. It is therefore tricky to time commencement of thyroid hormone replacement without creating a state of hyperthyroidism. Hormone replacement is done with the intention of stopping your own production of thyroid hormone so that when the thyroid is under attack, there is not the overproduction of hormone and subsequent hyperthyroidism.
I have a long road ahead of me still. However, it feels like I have travelled miles and miles of mountainous terrain thus far in the lead up to diagnosis, so I feel I have no option but to be optimistic. It is possible that I may not tolerate the hormone replacement. I have to wait til my levels get lower again before I try again to commence it (I was commenced on it for the first time at diagnosis, and promptly went into hyperthyroidism, had lower levels then had an attack and went hyper again.) I feel apprehensive that when I commence therapy again, I will again go into hyperthyroidism. Not only does this mean that I might never successfully be able to undertake the treatment, it also means more time feeling horrible. Without therapy, I may have to put up with the symptoms I always get as my body fluctuates between low, normal and high levels of thyroid hormone. This is a bleak prospect as even at my best, I only get a few days a week of feeling good. I also feel apprehensive because if I feel worse again with the medication, or have to deal with symptoms without medication, I have difficultly maintaining a normal life; i.e my work attendance takes a beating, my social life is not existent; everything is affected.
I plan to blog my experiences and things I learn along my road since diagnosis. I have found it so helpful reading other people's experiences over the years, so I hope to give some help to others. I will also blog about food intolerances and the recipes I learn.