Category Archives: Chronic Illness

About to launch

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One day in August I had the thought that my bucket list contained too many overseas travel items and I had no plans or money to go anywhere anytime soon. So, I worked out a way I could pay for flights right then and booked a three week stay in England.

I am now hours from leaving on my trip, with three winter weeks in England and a day in Paris on my itinerary.

How will I go on my own, travelling with illness issues? Dunno
How will I go in the freezing temperatures for three weeks? Dunno
Will I survive? Yes
Will I enjoy myself? Yes
Will I be exhausted when I return? No doubt

I will try to post about how I am going sometime when a free wifi and my iPad meet.

Signing out from Australia.

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A feeling of peace

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Today is the first day of holidays for most teachers and students in Victoria, Australia.

I am sitting in my lounge room watching Bargain Hunt on television, feeling a little pain but a lot of peace.

It is a good time to bring my thoughts together in words. These are my thoughts:

The working year is finished. I don’t have to plan anything right now, but I will have to at some point in the next month.

As exhausted as I was I attended the staff Christmas social function. I dressed up but I’m not sure I looked ok, I think I looked fat and was boring. I was too tired to know.

My son graduated from his postgraduate study on the weekend and it was a great day. Strangely, I really enjoyed the graduation ceremony and the speeches. I am very proud to have a son who achieves highly academically and who cares a lot about others.

My family visitors have returned home and it was lovely to see them as I won’t see them on Christmas this year.  I hope they don’t think that I am becoming a sad, tired lump of a person.

My niece is the cutest little thing. I can’t wait for the next baby to arrive.

I have a short manageable to do list for the next few days. But right now I don’t want to move.

In six days I head to England for 3 weeks of adventure. I have no idea how this will go.

My coughing is gradually going away again and I have to feel well by Sunday, cross fingers.

Tea tastes wonderful on holidays.

Cheers to a restful day.

A work friend gave me this cute red teapot set, she said it just reminded her of me the moment she saw it.

A work friend gave me this cute red teapot set, she said it just reminded her of me the moment she saw it.

Worn down

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The Twelve Apostles, a group of limestone pillars off the south coast of Victoria. There are only eight pillars remaining.

The Twelve Apostles, a group of limestone pillars off the south coast of Victoria. There are only eight pillars remaining.

Chronic illness wears you down like a rock. Even when you have had good days and you start to think things may be looking better, things may be turning around… there it is again… the feeling of unwell. Drowning in pain and temperature and confusion. No one knows what it is like and the people looking at you can not even tell.

Like a rock, will you be worn down until you become smaller than a grain of sand, until you become nothing?

Single and sick

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Retro dating

If you are chronically ill, you try to avoid putting the negative effects of your illnesses on anyone, including partners, families, work colleagues, friends and strangers. As a single person then, it is difficult to take the plunge to try to meet new people. Who would want to be with me and my illnesses? How could I inflict this life on someone? Dating is also so emotionally taxing and exhausting. The other day I said that I think I can’t be bothered. My son told me I need a different perspective to the situation. I guess I do but it might take someone to educate me to see it differently.

There was a time when I was married to a very generous, supportive man. I know he would stand by me no matter what. I failed that relationship, not him.

Then I was in a relationship with a man who is bipolar, narcissistic and unable to show empathy unless he is trying to get something out of you. He failed me and left me three weeks after my diagnosis with fibromyalgia.

Right now I am flaring, sick, dealing with new medication and all round mentally exhausted. I am not as active as I want to be and would be poor company most days. I am also 41 and becoming very comfortable running my own life solo.

I am starting to consider the possibility of finding a new mate incomprehensible.

How can someone who is so frequently sick and no doubt very hard to coordinate time with (and put up with) find someone who will be supportive in this situation?

Surely the initial meeting someone and having early dates requires you to be at your best physically and mentally?

When should you tell a new person about your illnesses and your struggles?

How could you put the struggles you deal with daily into the life of another person?

How would you even find someone compatible at this stage of life?

These questions are not all unique to dating, or finding a partner. However, in the mind of someone who is chronically ill, the odds seemed to be stacked against you. You could have the most interesting, engaging personality most days, but one day you’ll be in pain, medicated up and foggy and you won’t be so attractive anymore. Then this will become more than just one or two days, when you have a flare and you can’t make it out of your bedroom. Suddenly you won’t be able to give anything of yourself but you will want your partner to somehow understand and support your random needs. No one would want this.

So, this is my perspective. Please tell me another way of seeing this situation of being single and sick. Maybe I need to hear success stories. Are there any?

Miracle Drug Day 23

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You just never know how sick you are until you start to feel better. Last night was terrible, this chest infection was trying to beat me down, my temperature was up and wouldn’t come down and I was aching from the coughing and from the fourth dose of miracle Drug which hits me like a truck.

It is frustrating that yet again I have to take days off work. I only have two and a half weeks to get through until holidays, but this last few weeks have been such a struggle. My body doesn’t care that I have so much I need to be at work for right now, as the end of the year races towards us.

I don’t know what to blame: flare, Miracle Drug, end of the year run downness, kids giving me illnesses, or all of the above. I have managed to stay away from most “regular” illnesses this year, but with Miracle Drug in my system I obviously can’t fight them off so well. I think Miracle Drug is helping my arthritis ever so slowly, but at the cost of getting sick (at the moment). My blood tests may shed light on this, but I really hope they just come out high ESR, I can’t deal with anything more complicated right now.

I need to get this all sorted by Christmas. Come the New Year I will be on my own on the other side of the world, trying to have an adventure. I can rest and I can pace myself, but I won’t have time for medication side effects or illnesses every few days due to no immunity.

Come on body, get this shit sorted out.

Isn't this pretty? This is what the cells in the immune system look like.

Isn’t this pretty? This is what the cells in the immune system look like… or should look like if it’s a healthy system. I’m guessing mine doesn’t look like this right now.

Miracle Drug Day 21: A discussion about doctors

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I have a sore throat and it’s been that way since Friday night. It’s now Sunday morning. I don’t have a voice anymore. Actually my voice comes and goes depending on how well the pain killers are working.

In the five page instructions that came with Miracle Drug it says tell your doctor straight away or go to Accident and a Emergency if you have a sore throat. Ok, I’m going to use common sense here and not rush to the hospital. However, when I saw him a week and a half ago he was all worried about me getting sick because I was showing signs of going down with something. I felt better for a few days, now I’m having signs of becoming “regular” type sick again. I think it is a lot about being run down and tired at the end of a year and after a saga of searching for a new diagnosis and having a flare.Side effect sexiness

I am getting really tired of this ongoing question about whether I should go see the doctor or not. It also says go to the doctor if you bruise easily. I always bruise easily. It has been worse lately though which may be because of Miracle Drug. I hit the inside of my wrist on the guillotine last week and I got a lovely big black bruise out of it. At least I got the bruise while cutting paper for my students for their art activity, not while walking past a table and hitting it, or like in the old days, having a battle with my ex.

I don’t feel a fever and I actually feel ok body wise. Not spectacular like I can go do anything I want, but ok like I might have a shower and go somewhere later. My mind is also quite relaxed and it is thinking pretty clearly right now. I’m going to defer the idea of going to see the doctor.

This is not a good week for getting sick, I have a lot of busy days at work coming up. So if it worsens I will have to get to the doctor quick smart. He will be grumpy if I end up going because it gets worse and I have had this sore throat for days, but I’m not rushing up there. Unfortunately if it worsens I will wish I went up there sooner.

I remember years ago when I would go to the doctor (GP) maybe two or three times a year. I would go when I had the flu and/or sinusitis and/or a chest infection. Oh, and I would go for my biannual women’s checkup. Anything else I just put up with because it had been mentioned before and nothing had come of it. Like migraines and toes swelling and fatigue for example. All symptoms that could have pointed to an illness, but they were never investigated further. Those were the days when symptoms were not debilitating. How things have changed.

Those were the days when I went to any doctor that was available, I told him my problem, he looked in my mouth and ears and listened to my chest, he told me what it was, I accepted what he said, took my prescription, had a day or two off work, and that was that.

Doctor and patientNow my visits are more like an ongoing story. They are all linked together with the same theme and the same characters. There’s the inevitable checking of blood pressure. There’s the catch up on latest symptoms and shared reading of the letters from the specialist. There’s the discussion about medication and blood testing and the printing of prescriptions.  There’s a little banter between the characters, some sharing of personal information, then a discussion of when they will meet again.

This is a relationship happening here, between doctor and patient. For the first time since I was a child I want to keep seeing this same doctor. This one is a keeper. I can’t tell you how many different doctors I have seen in the last five years since I returned from the US, because I cannot remember, but it has been a lot. Finally, when I saw this guy, he listened and he tried things, even though they might fail, which some things did, he had a go, and he was smart enough to find me an excellent new specialist rather than send me back to my previous one. He stumbled through and he got results. He also makes me rest, which is important. He doesn’t annoy me about things like water exercise, which there is 0 chance of me doing unless I build a warm spa in my backyard. He just deals with the body and it’s symptoms. Sometimes I argue with him and he puts me straight. He thinks a lot. How often do you feel your doctor is mentally engaged in what he is doing? That is rare in my world. Doctors seem to find simple answers and then they get rid of you. Quick in, quick out. But I don’t feel rushed with my doctor and I know he tries to do what is best for me.

I feel a little sad that I have crossed over into the regular contact with my doctor zone. I used to think that in this zone there are old people and people with terrible illnesses. So, either I have become old or I have a terrible illness, or both. Maybe there are young sick people in this zone too? I don’t want to be in this zone, but it is what it is. I’m in the zone and I don’t think I will ever get out of it.

A Quick Coping with Chronic Illness Quiz

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A Quick Coping with Chronic Illness Quiz

Question 1.

You have had a busy week, worked hard and kept up with life’s requirements and responsibilities. It is Saturday and your family is all out for the day, you are home alone. Do you:

a) Sleep in bed all day and have a shower just before anyone comes home

b) Write a list of all the jobs you need to do around the home and get as many done as possible

c) Get dressed in your favourite jeans and top and head to the local shopping centre for a days shopping, coffee and the beginnings of painful feet

d) Spend the day reading, sipping cool drinks and enjoying the peace and quiet

Question 2.

You have your bags and you are heading home after a busy day at work. Your body is telling you to sit down and your feet are starting to shuffle. A co-worker sees you walking past and calls out in a panic for your help with a cut and paste disaster on a Word document. Do you:

a) Tell them they will work it out, otherwise to redo it, and keep walking

b) Tell them that they will have to find someone else, that you’re leaving

c) Go over and manually help fix the document

d) Tell them the name of someone else who is good at that sort of thing

Question 3.

Christmas Day is approaching and your family, who live in another state, has been asking about whether you will be flying to be with them on Christmas Day. You haven’t been well and you have a long holiday trip planned for after Christmas, which you haven’t really saved properly for. Do you:

a) Tell them you are coming and then find the cheapest flights available

b) Tell them that your health has been bad and that you need to rest before your trip

c) Tell them that it is just one day and that you will ring them, that will be sufficient

d) Invite them to come to your place instead, knowing that they will never do that

Lotus flowers

Answers

Question 1.

All of these answers are acceptable, it just comes down to which option makes you feel most happy. All options have flow on effects, especially mental ones, such as the satisfaction of getting jobs done around the home or the feeling of restfulness and centredness after spending a day relaxing with a book, so remember to consider this as well. What will you get out of the action v’s what do you need right now. It is important not to keep thinking over the other options all day with guilt that you didn’t choose them. Choose your option and enjoy.

Question 2. 

The right thing to do here is c. This should be a quick fix to help someone and then you will be back on your way home. However, depending on how tired you are and how much pain you are in, the other options may slip out. Be careful to not let illness get in the way of you being the person you are without it. Checking your inner voice to make sure it isn’t driving negativity is very important and it can be hard to do that when in a lot of pain. If you do slip up, don’t forget you are human and you are in pain and sometimes you can’t be everything.

Question 3.

The problem with this question is that you probably want to jump on a plane and go be with your family for Christmas. However, life with illness means that you have to plan your energy use very carefully. Your body doesn’t care if it’s Christmas Day, your birthday, graduation day, the day you are presenting a proposal to your bosses, your children’s school concert day, the day you leave for a trip overseas, etc. Your body needs rest constantly, in order just to get through a normal day. Be very careful with planning big events and trips. Sometimes you will have to say no to some things in order to say yes to others. Don’t fight it, it is just the way you have to live with chronic illness.

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It doesn’t matter. Be kind to yourself.