Single and sick

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?

A Quick Coping with Chronic Illness Quiz

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

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.

Score

It doesn’t matter. Be kind to yourself.

Then there is guilt

I realised this morning that having illnesses in my life makes me feel guilty.  Guilty as in I have done something wrong to someone, not guilty as in I have done some crime.

I feel guilty that I am sick. I feel guilty that my life is this. I feel guilty that I have changed. I feel guilty that I inflict this version of me onto others. I feel guilty that my son has to witness this everyday. I feel guilty that I can no longer do the things I used to. I feel guilty that my moods are up and down and a lot down. I feel guilty that I come home from work, sit in a chair and then sleep two hours only to wake up in a grumpy mood. I feel guilty that I suddenly get angry sometimes. I feel guilty that I talk about illness and my symptoms. I feel guilty that I don’t feel a part of anything anymore. I feel guilty that I can’t walk further than a slow crawl around the block. I feel guilty that a shopping trip with me involves stopping and snappy answers. I feel guilty that my mind races all over the place and I jumble up what I am trying to say.

This could go on and on. Why, if I did not cause or ask for these illnesses to come to my body and into my life, do I feel guilty?

Solo trip to Struggletown

Being an independent person is starting to feel like a problem. Being an independent person has got me used to relying on myself and used to not needing or asking anyone for help. I like being independent. Actually, it is all I know. This is a good trait, yes?

No. Because when you have a chronic illness your body makes it very difficult for you to stay independent. With an unlimited budget, you could do it. But the fact that illness leads to difficulty working means that money is not in abundance. Eventually there will be times when you will need help. With a caring and supportive spouse or family, you could do it. However, many people with chronic illnesses report that their families do not support them how they need, that their illnesses are not trusted as real or that they are spoken about behind their back and called names such as lazy.

Probably even worse is the position that single people with illnesses find themselves in. They need help but don’t know what to do about it. Probably don’t know what to ask for help with and possibly don’t even have anyone to ask.

Illness tends to drive people away. You cannot be relied on anymore, you’re always sleeping or sick or staying home to rest. You aren’t fun anymore, you stopped taking risks and staying out late and being energetic. Pain is a boring topic. A future with you started to look sad and boring and way too much hard work.

There is a cycle happening here. Before you know it you are ill, isolated, lonely and depressed. There’s no surprise then that the chronically ill account for a large percentage of suicides.

Some American stats to ponder, from invisibleillnessweek.com:

– The divorce rate among the chronically ill is over 75 percent.

– Depression is 15-20% higher for the chronically ill than for the average person.

– Physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.

A letter to the non-chronically ill

Dear people who do not have a chronic illness,

I have three things I wish you to know:

1. You don’t want to know what it feels like to be chronically ill, but it’s bad

When you ask me “How are you?”, I have no answer. I could say, thanks for asking, but I am, as usual, feeling like a piece of shit that is stuck on someone’s shoe and it keeps getting dragged out of the house and trodden on again and again, even though it would just like to get scraped off the shoe and thrown back into the bed of shit from whence it came. But I actually say something like “I’m here” because that is true, I am here, and for that I am grateful and happy, as every day out is a success.

I cheer in my head when I make it to work, every day. Please be happy that I am there too. I have so many symptoms I might seem vague or ditzy or short with others, but I am still me inside, trying to subsist with this (these) awful illnesses.

2. Take your cue from me how to act

Yes, I am limping. Yes, I am in pain. No, don’t give me sympathy. This is normal for me. I’d love a drink though, if you’re up, because you have no idea how hard, how much pain and stiffness I have to beat, in order to get up from my seat and walk a few steps to get a drink. Small things please me, a drink that I did not have to get myself, it’s a winner.

If I’m pretending to be ok then pretend along with me, just act normal. Even if you know more than most about me. Let’s just get on with life hey, chronic illness or no chronic illness. But if I’m looking beat, if I’m propping myself against a door frame and rubbing my head or my eyes or my arms or stretching my feet, please ask if I’m ok. That’s nice to hear sometimes, especially if only to give me an opportunity to vent my frustration. I may need something and you might be there just at the right time.

3. I am happy with the small stuff

As mentioned earlier, small gestures mean a lot to me. Because I struggle with so many ordinary tasks and because my life is filled with uncontrolled pain and fatigue, I have learnt to slow down to notice the small details of life, the natural wonders around us, and I love them. You might even feel jealous that a heightened level of appreciation and happiness has opened up to me because if my illness. There is something good at least possible from the arrival of this unwanted invader into my life.

We with chronic illnesses know how precious every day and every special event is because it takes us so much effort to attend, but we still do, because we want to live our lives. We want to live and enjoy life regardless of the obstacles and challenges we have to face.

Try to slow down too and enjoy your life. Or it will be gone in front of your eyes so fast.

Thank you for taking the time to read my thoughts.

Lisa.

Keeping check on my partner

Mental illness affects the behaviour of people in all sorts of ways. In many cases Doctors can diagnose these illnesses but they can’t offer solutions that work, the illnesses don’t go away and the people who have them never feel “normal”. In this post I am going to explore what mental illness means for the partner of the person who has the illness. I am writing this post from the perspective of someone who has in the past supported a partner with bipolar disorder. These are my experiences, they cannot be generalised to everyone in the same situation, as people behave and react differently. However, I hope some people find that they connect to these experiences, whether they have a partner with bipolar disorder or have been in such a relationship before. I am sure parents of a bipolar child may also connect with some of what I say, as may partners and families supporting people with different mental illnesses. For those of you reading this post who have no experience with this, then I would like you read on, as you never know when a situation like this might touch you and your loved ones.

Unless you have lived with someone with a mental illness then you can’t imagine how it controls your life, your relationships, your emotions, your feelings of safety, your self esteem and your idea of a normal life. These illnesses pervade all areas of your home and are impossible to evict.

Partners of those with mental illnesses carry a massive job on their shoulders. Not only must they know what they are doing and their own responsibilities in life such as working and caring for children, but for many, they have to keep a close eye on what their partner is doing, foresee how this may affect him or her and the family, and be catcher for all the debris which seems to follow their partner around. As the partner cannot be around all the time, then they often have to resort to checking strategies to make sure everything is ok. For example, have meds been taken, has the spouse arrived at work on time every day, is the bank account still intact? This may seem like an invasion of privacy but when your family relies on you being on top of any random thing that may come into your lives, then you must do it.

The partner of someone with a mental illness is always on guard. On guard for signs of anything different, that their partner might be becoming unstable. They also have to read into everything because a lot of the time their partner may lie. Sometimes the lies are there to cover something up but often the lies hold no real purpose. This is because making up what you think you want reality to be can just slide from the tongue of a person with bipolar disorder. They will then defend their lies with more and more lies and amazing counter accusations. That is how I experienced it even though I am sure lying cannot be a universal trait of all those with bipolar disorder. Because of lying, privacy can really go out the window. Partners may start to sneakily check pockets, look at texts, go through call and search history, go over bank accounts, call friends or their partner’s workplace. They may also need to be on guard for the hint of an out of control argument, a violent episode or a suicide attempt. These are no small matters and you can see why the partner may want to use checking strategies to stay in touch with their partner’s behaviour.

This is a very difficult way to conduct a relationship and it probably won’t seem appropriate unless you have been in this situation. The partner will need to stay on top of  their own health and mental strength in order to meet issues in a way that does not escalate them. This doesn’t mean issues won’t escalate, just that the spouse tried to employ techniques that are supportive and that are promoted as good ways to respond.

Does all this seem to scream out that the relationship is doomed to you? Isn’t it often said, if you can’t trust your spouse then you shouldn’t be with them? How can you be with someone who hurts you? Also think from the perspective of the one with the illness, how can a person live their life with constant questioning and analysing from their partner? Maybe also with their partner constantly calling them a liar? The thing is, these two people still love each other and were it not for the illness, there probably wouldn’t be a question of trust.

Even with all the checking, people with mental illnesses often still fall to their weaknesses, be it drugs, sex, spending, gambling, disappearing, pornography, self harm, risk taking, being violent, destroying property, fighting with others, crime, the list goes on. Think of how much work the spouse puts in to keeping the relationship going and their family together, only to lose out to the illness anyway. When this happens the partner may try to seek professional help for their love, but this role of saviour is not always appreciated and can be very difficult to live with. Taking on the saviour role may change the relationship dynamic in a way that cannot be reconciled in the long term.

Many relationships where a mental illness is involved will fail. For example, in couples where one person has bipolar disorder, it is said that 90% of marriages will end in divorce. This divorce happens not because of the illness, but because the illness was not controlled.

My relationship lasted five years. That doesn’t seem long in comparison to the whole population of relationships, but looking back at the situation now I can see that this was long. It was five years of on and off dramas. Five years of manic, of depression, of violent outbursts, of disappearing, of narcassistic behaviour and of self pity. There was also love and fun times (thank goodness) but the reality was pretty far from normal. Looking back I see that I was so generous and full of empathy that I could not see how unbalanced the relationship had become, and how we would not be able to continue like that if the illness was not managed. My ex had every right to refuse medication and treatment, and he did.

I am happy that two years later I can write this post and not feel sadness.  If you are in a similar situation as me, I won’t say leave, but I want you to think long and hard about why you are in that relationship and what you think the future holds. Just in case you think your partner will change, if they have bipolar disorder then they will always have it and their behaviour may never get better.

 

The upside downs

Life has a habit of turning everything upside down periodically. For many people, this happens way too many times. The types of events that may turn your life upside down may be things like separation, death, illness, accident, disappointment, loss of job, and all manner of things really. These are things that make your life zag off the line of trajectory which you thought you were following.

Finding out you have an illness and that you will be ill probably for the rest of your life is obviously life changing. In fact, this illness may have been affecting your life long before you knew it existed. Looking back, big events may have, in some way, been influenced by this hidden illness and you never knew it.

For example, there are times I knew I was tired in my late twenties and thirties. I mean really tired. I felt unable to keep up with the demands of work and home and I just needed to escape. Most of the time my escape was sleep. There was one time this tired took over beyond what I could manage. I was sure I was going to come down with the flu or something. But the flu never come. The Dr didn’t look very far, he said it might be “mild depression” and “stress”. Hmmm. It might have been. But now, years later, I wonder if that was an early fatigue episode. An early warning sign of what was to come. The only thing is, after that illness, I was never the same. I felt trapped. I was flat and needed an oomph. Not long after that my world upside downed and I eventually separated from my husband of 15 yrs. As with all break ups there were a lot of elements involved, but I think illness was there and I didn’t know it. In fact I wouldn’t know it was there until about five years later.

When I found out about having fibromyalgia, my life upside downed again. It upside downed due to the illness being a reality and it upside downed because my then partner decided that would be the perfect time to end our five year relationship. Since then I have enjoyed living the single life. I actually am loving being single right now.

Some people who have partners and a chronic illness can have a lot of issues because of the illness. It is not for me to tell you because it is not my experience, but from what I am told, lack of understanding of the illness is at the heart of many of these couple problems. An illness like fibromyalgia (and also illnesses like lupus, Lyme disease, all the different arthritises, and many many others, too many to list), are pretty difficult to understand if you have the problem, so it’s even harder to understand, maybe impossible to understand, if you do not have the illness. Being a close watcher of the illness gives you some insight, but only if you attend to it and have an open mind about what an illness can do to a person. Add in the problem that no two people experience the same pattern of symptoms and progression of these illnesses and you may as well say give up on trying to understand it. In my experience, all others can really do is accept, give you space and support when needed, and be gentle with you.

So then, I have the problem of whether to seek a partner, who will then become inflicted with this roller coaster lifestyle of good/bad days and engaging/flat Lisa. Even if I was to find someone who fits my personality, I’m not sure I want to do that to anyone. I also would have to work out how to keep the happiness I have now found and integrate that with another person. I guess I have to find someone special first.