What's For Dinner Mum? (12 More Pages Guest Post)

Ahhh... the joys of domestic duties when you have a chronic illness. Sometimes you have to laugh, even if the laughter is hysterical. I'm guest posting on 12 More Pages again this week. Remember to check it out for some great Dysautonomia information.

Ok I've decided to jump right into the day-to-day practical issues that haunt all of us with Bob. It's these bland and normal daily chores that often seem to cause the most grief. Making dinner. Who would have thought it could become such a drama. Yet each day when that time rocks around and that simple sentence is spoken aloud “What's For Dinner Mum?”, it's just another reminder of the obstacles we have to face. I'm sure someone without a Bob in his life would wonder at the ability of such a boring daily chore to arouse such feelings of dread, guilt and hopelessness. For those poor buggers who innocently utter these words please note that you may have your spleen pulled out through your left nostril on occasion. It's nothing personal. But those four little words can be like fingernails on a chalk board some days. So the question remains, What is it about dinner that does this to us?

The time of day: ok I know for most of us mornings are like diving head first into the bowels of hell. There's something about Bob and mornings that just doesn't mix. It's the whole oil and water thing and I'm sure Bob is one of those trans-saturated-clog your arteries kind of fats. But the late afternoons and evenings can be just as bad. By that time you've spent very available drop of energy going to work (if you still can), getting kids to and from school and after school activities, attempting household chores and generally just making it through the day. The idea of then having to prepare a meal can feel like trying to scale Mt Everest in your Sunday Best. Where's my Tenzing Norga?

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Harley & Rose, They Just Lost It For A While.

This post was originally written for 12 More Pages in 2010.

Relationships are hard work, just look at the ridiculously high divorce rates. Hollywood and television have indoctrinated us to seek out the fairy tale, to find our soul mate who will make us complete, slay the dragons and hold us tight for all eternity. Unfortunately, life isn't like the movies (not that I still don't wish I was Juliette Binoche in Chocolat with Johnny Depp turning up on her doorstep at the end of the movie; but hey, we're all entitled to a bit of fantasy every now and then). Relationships are filled with ups and down's, even with the best of intentions and the most perfect of circumstances. When you add a chronic illness to the mix the strain it places on a relationship can be overwhelming. Any little problems that existed beforehand tend to be amplified by the stresses associated with a partner's illness.

We agree to “for better or worse, in sickness and in health” but it is very different when you are actually faced with the situation. Whether you are the person who is ill, or the significant other who is well, what we imagine we can deal with and what will occur should a partner become ill, can bear little resemblance to the reality. Chronic illnesses like dysautonomia, can't be contained in a nice 50min House episode. Yes, House may give you a diagnosis and a drug, but unlike the dramatic life-saving, experimental brain surgery that saves the actor in the last 5 mins of the show, dysautonomia and it's impact persists long after the credits role. In fact, it can persist from Episode 1 Season 1, all the way to Episode 48 , Season 50, often with little change. No one makes a TV series like this for a reason. How does the audience keep interested and maintain compassion for the character who is permanently ill. It all becomes boring, fatigue sets in, and ratings drop. We are programed to expect a resolution to the 'crisis'. Unfortunately with chronic illness the 'crisis' may never end and can become a permanent state of living.

Being chronically ill dramatically changes intimate relations. Both individuals change, and the nature of roles within the relationship change. For the person who is ill your self-image is dramatically altered. We may see ourselves as the nurturer or provider, a leader or the go-to gal, chronic illness doesn't care . Hell, Cosmopolitan and the like continually tell me I can and should be able to do it all, why would I think otherwise. When you are chronically ill you can no longer fulfil these roles as we have them laid out in our heads. We are forced to re-examine who we really are and our place in our relationship.

It's hard to love yourself when your body betrays you and when you cannot participate in life as you want, and feel, you should. If your own self-image is so low how can you have anything to give to a relationship. How can you support your partner when you are unable to support yourself. Doubts set in. You begin to wonder why your partner would even want you when you don't even want yourself. How do you maintain an intimate relationship when you are permanently exhausted.? Nausea and dizziness are hardly conducive to getting 'in the mood'. By that I don't necessarily mean sex. The general day-to-day intimacy of simply touching, hugging and kissing, the emotional and intellectual intimacy, are often difficult when you are feeling so ill you just want to lie down in a corner and cry. These feelings begin to colour your interactions. You interpret the actions or words of your partner in light of your internal dialogue, and react similarly. Your partner has no idea why you are acting the way you are and misunderstandings can start to build.

Equally, if you are single and want to find a partner, it is easy to wonder what you have to offer to someone else, or why anyone would want to be with you and all your chronic illness baggage? How do you explain such a complex illness without making a prospective partner want to run for the hills? You cannot participate in the normal dating or relationship activities. Going to the movies, out to dinner and parties are often not an option. You can feel that you are condemning your partner to a life of isolation. You feel a burden. You attribute your feelings to your partner when in fact they may never have even considered you or the relationship is that light.

For the partner who has to watch their loved one so ill, it can be over whelming and confusing. When you love someone you want to be able to help them, you want to take away the pain. It is common for care-givers to feel impotent, or overwhelmed by the situation. With an acute illness, eg a knee surgery, you know there is an end. You can sustain the care-giver role because you understand it and know that in a couple of months the person will be back to their old self. When there is no predictability, no path, no respite, as with chronic illness, care-giver fatigue can set in. Burnout is common in those who care long term. It can be hard to understand this as the sick person. I know at times I have thought, “I'm the one who's actually sick. 'You' need to get over it and grow a pair”. It's hard to have compassion for others when you are permanently ill yourself. Even knowing logically that it is hard for my family and friends I often don't have the energy to deal with their issues. When it is your partner you do have to make an effort to understand their feelings and frustrations, as this can help the relationship and you in turn. Sometimes you need to prioritise your relationship as we do other things.

Well partners can fall into certain roles which may, or may not work. They may become the 'hands-on' carer who is involved in every step. Alternatively they may become 'over-protective' and wont let you do anything. There are also those who withdraw from the relationship because they don't know what to do or how to cope. Many carers don't want to admit that they can't cope or don't like the fact that their partner is ill. They may feel guilty because they feel their partner is a burden or that they are no longer the person they married, and don't want to feel that way. Again this colours how they interact with the sick person. In both cases, partners may feel that their feelings are wrong and that they are abnormal, when in reality they are normal reactions to an abnormal situation.

In so many cases both partners are feeling, lost, alone and frightened but don't feel they can tell the other one for fear of burdening them. Or they may be scared that giving voice to their fears will make them real. If you don't talk tensions can quickly arise and begin to fester. A simple misunderstanding may end in a huge argument. As a sick person I know I hate being fussed over. If my husband were to fuss over me and always treat me like a sick person it would change my opinion of him because he wasn't meeting my needs. I would wonder why doesn't he know I'd hate that. I would be more stressed and that would make my symptoms worse and it would become a vicious circle. However, if I don't tell him how would he know? It can be hard to be open and honest in a relationship at the best of times, and chronic illness is frequently uncharted stress-filled waters for both parties.

Dysautonomia is a particularly difficult disease to understand and explain. The unpredictability of symptoms and the way it impacts on our lives is hard for even us to understand. One important step in helping a relationship is to help educate your partner. Encouraging them to go your appointments or asking your doctor to talk to them can be particularly helpful. If your partner can understand that you may have to cancel a dinner at the last minute due to your symptoms, it can reduce the stress considerably. Conversely if your partner thinks you should “just get over it” and makes you feel 'bad' or guilty for ruining your dinner plans, stress levels can spike and make your overall health and relationship much worse.

It is important to re-negotiate your roles in the relationship. You need to set aside a time to talk, not wait till you are both upset and in the middle of a fight. In many ways this is why seeking out a professional for counselling can be the best option. No matter how much we might wish it otherwise, dysautonomia involves disability. We can no longer do it all. We need to sit down with our partners and work out who is going to do what. It might be the simple things such as who makes dinner. Or it might be the complex things like either earning a wage or organising the bills. Before being ill I worked and took care of 90% of the kids and household chores. Now I can't work and my husband and kids have to help out more. We had to re-negotiate the way things worked. Part of that process was my husband becoming aware of how dysautonomia affected me day-to-day and understanding that I now need to strictly prioritise things. We certainly don't always get it right but we are slowly getting there.

It's important for both partners to understand that a good relationship is not based on how many times you go out , how clean you home is, or if you have the latest fashions. Without fail, good relationships have good communication and find enjoyment in each other regardless of where they are or what they are doing. It is more important to prioritise the incidental intimacy of sitting on the couch watching TV together rather than going to a work BBQ because it is expected, and then being laid up for a week. It doesn't need to be complex. It can be simple things such as resting for the day, rather than doing loads of washing, so you can go out for dinner for an hour with your partner. Or going twice a year to a Gold Class cinema with foot rests and recliners, rather than failing at a normal cinema 20 times.

Most of us who are ill realise we need to have an non-health related outlet to maintain our sanity. It is equally important for the well partner to have an outlet. As the sick person we are more likely to be offered counselling or join a support group, this isn't always offered to the partner. The outlet doesn't have to be a formal support group. It may be participating in a sport or social group. Often just being in an environment totally removed from home and illness can be enough. For example, Saturday's my husband plays sport all day and then goes to the clubhouse after for a beer and 'man time'. It's his way of letting go of the stress and rebalancing. It helps keep him sane (and me) and in turn means he is more relaxed and switched on when he gets home.

In reality the things that you need to do to support your relationship when you have a chronic illness are the same as in any other relationship. If either partner feels unsupported their will be issues. If the partners don't talk there will be issues. If you don't re-negotiate roles over the years there will be issues. Having a chronic illness simply forces the issue and magnifies any existing problems. It is not easy either starting or continuing a relationship when one partner has a chronic illness, but it is possible with work, and accepting that there will be ups and downs. All relationships are a work in process. Chronic illness just gives us a different challenge.

“life is a bitter disappointment
she would hear young Harley say
if you find something more important
I will not stand in your way

like static on the dial
a look come back in style
Harley and Rose
they just lost it for a while”

(“Harley & Rose”, The Black Sorrows song :1990)

We all lose it for a while, but more importantly we mostly get a chance to find it again.

Cheers

Michelle :)

Frankie Says Relax: 12 More Pages Guest Post

Guest Posting on 12 More Pages this week. Head on over for the full article on progressive muscle relaxation. Don't forget to check out the other information on Dysautonomia.

Remember the sagacious words of Frankie Goes to Hollywood in their iconic song “Relax”. OK so the connotation is not quite the same, (wow I was so innocent back then. I thought they just wanted us to sit back and smell the roses. I couldn't understand why my mum wouldn't let me get the record), and I am so showing my age, but I loved those t-shirts with their pithy message. Obviously after my last blog (“Serenity Now”) everyone will now be living Frankie's dream of relaxation and have achieved their personal Nirvana. Life is bound to be filled with lolly pops, kittens and an unlimited supply of dark chocolate just when it's at that not quite solid not quite liquid, level of gooey goodness (well the later may be my own personal idea of bliss, but you can insert your own blissful fantasy). We have all learnt to breathe our way to serenity, and that my friends, is an award worthy achievement when you live in a permanent brain fog. Now just in case any one is still having difficulty finding their bliss, here is an alternative, or addition as the case may be, you can have up your sleeve for the days when your serenity begins to slip.

Progressive Muscle Relaxation:

I like progressive muscle relaxation as it's yet another reason to commune with my couch. I never realised they had memory foam back in the early 90s when we bought it, but that perfect mould is there to welcome me each morning. At its most basic, Progressive Muscle Relation simply involves the slow and progressive tensing and releasing of muscles. Most commonly it begins at the head and works down to the toes, but this can vary. If you have a bad back, neck etc you may want to double check with your doctor about doing some of the movements. I know it's obvious but after the MacDonald's Hot Coffee Litigation I just have to add, if it hurts STOP! Also peanut butter may contain peanuts, and milk may contain dairy products (I love today's product warnings). Now you may also be concerned that you will look a little bit mad, especially doing the facial exercises, but this is the price we pay for bliss. Just remember not to hold it too long or the wind may change!

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Mummy Dearest: Mothering with a Chronic Illness.

Being a mum is hard work. There's always someone waiting for the opportunity to chastise you for the way you are raising your children.

• If you work, you are neglecting your children and contributing to their delinquency. 

• If you put your kids in childcare, well it's time to call child services as you have apparently condemned them to a life of under achievement and attachment disorders. 

• If you stay at home, well then you are a worthless woman not contributing to society and providing a poor example to your children, that says a woman's only value is in their ability to cook and clean. That you are raising a generation of over-reliant, self-indulgent kids.

It's The Scarlet Letter all over again. You can't win. Add chronic illness to the mix and you might as well toss it all in and move to a desert island somewhere in the Pacific.

Every woman has a close personal relationship with guilt. If you’ve popped out one or more rug rats then you truly know what I’m talking about. Guilt is one of the unglamorous side-effects of pregnancy, like the haemorrhoids and excessive flatulence that our mothers never warned us about. When your milk comes in you get a simultaneous lifetime supply of guilt to boot; would you like fries with that? You beat yourself up constantly for all your failings as a mother. Even prior to becoming ill I always felt guilty about my mothering. As a mum you always believe that you are not giving all that your kids need, be that time, love, or after school activities.  Regardless of the reality of your situation. 

 

We all compare ourselves to little Johnny’s mum. You know her. That woman with perfect hair and coordinated outfit, who attends all the excursions, bakes cookies for class, iron’s little Johnny’s uniform perfectly, makes the perfect nutritional lunch and is a clone for Mrs Brady. God how we hate her! However, introduce her to Bob or one of his mates and little Johnny will be rocking up (late of course) in yesterdays grotty jumper and unmatched socks, with a jam sandwich and piece of plastic cheese in his lunch box. 

 

Bob adds a whole new level of guilt to motherhood. Having Bob in your life means that you simply can’t attend every performance or sporting match; that you forget to hand in the excursion notes or to wash the uniforms. It means you can’t drive your child to a play at a friend’s house, or take them to the show. 

This is when guilt goes into overload. You don’t need anyone else to tell you should feel guilty you “know” you are the world’s worst mother. I truly realised the impact Bob was having on my family’s life a few months after he started hanging around. My eldest had just started high school and there was an information night. We drove as far as the end of our road and I had to pull over.  I was shaking uncontrollably, and could barely focus on the road. We sat on the side of the road for 30 minutes with my head between my legs until we could drive back home. We never made the information night.  It signaled the start of the kids missing out. 

 

They have put up with a lot over the past three years. It scared the hell out of them and I was too ill to either fully realise, or comfort them. It was only a few months ago that my youngest could finally tell me that he had thought I was going to die. It felt like someone had reached in, ripped my heart from my chest, threw it on the ground and stomped it into oblivion. I just wanted to reach out and wrap him in my arms and never let go. An 11-year-old (or as he was then, eight) should never have to deal with such adult issues, the guilt was, and is, overwhelming for putting him in this position. Even my stoic eldest was suffering in silence; he just didn’t want to worry me. A 14-year-old shouldn’t be worried about whether or not his mum will be able to drive home safely from his bus stop. He should be thinking about girls and friends and being a normal obnoxious, self-absorbed teenager. 

You don’t choose to have Bob in your life but you beat yourself up every day for the burden you are placing on your family since he came to stay. 

 

Since Bob came into my life I have quite simply been unable to be the mum I want to be. When you are sick and exhausted you yell.  You have no patience.  You are unable to tolerate normal kid behaviour. Music, laughter, horseplay, the word “mum”, dirty socks on the floor, all can become torture to the soul when you are sick. You overreact, and you beat yourself up for it after. It's so important to apologise to your kids when you are more together. To give them a hug and let them know it isn't about them. To let them know that even mums can make mistakes, but that it doesn't stop you loving them. That you are human after all.

It's important to remember that the ridiculously unattainable, high standard of motherhood that we set ourselves is not reality.  It is the product of the Hollywood fantasy machine. Lets face it, Angelina Jolie is portrayed as the epitome of motherhood yet she has a cast of thousands to help her including nannies, drivers and personal assistants. I hardly think she was doing loads of washing and picking up toys after she popped out her twins. And my Hollywood Posse? Lets see. I have me, my temperamental body, my fog brain, a busy husband who helps when he can, and two kids who try to help but are in reality, kids. This is reality. Even if you are lucky to have friends and family they are not with you 24/7.  So why should we expect that we would be able to be Angelina or one of the many other Hollywood fantasy mums, especially when we are also ill? Would we expect it of others? No. So why do we expect it of ourselves?

Underneath it all kids really don't care about attending the latest movie or going to the pool on the weekend.  Not that they wont pout and slam doors, they are kids after all.  And we are dumb parents who are evil and stupid and just don't understand. What kids want is your time. Its hard when you are ill to have the energy to interact with yourself let alone your kids, but even sitting on the couch together watching TV is valued by your kids because you are there.  

One of the things I missed was what we called MLT time (Mummy, Liam and Thomas time). This is something I had done with my boys since they were little. Every week we had a standing appointment. After school on a Wednesday we would go to a coffee shop and have hot chocolates, or lime spiders (gross, never understood that one) and coffee and cake. We would spend the time catching up and chatting about school, friends, life everything. It was time specially dedicated to them. The along came Bob and it was no longer possible.

We didn't have MLT time for a long time.  My health simply wouldn't let me sit in a cafe for any length of time.  And I was pissed.  So started thinking outside of the box.  One of the things we tried was making a time after school, but at home, to have hot chocolates.  We'd sit around the kitchen table, or on the couch, and chat. They appreciated the effort so much, even if I was mindless zombie mum. Over the next 6 mths we were able able to do the old MLT time.  Not as often as I'd like, and we have to suss out whether the cafe has a couch and a loo. If they have an air conditioner or outside seating.  But we were doing it. I didn't realise how much they appreciated that little bit of time, until they told me how much they'd missed it and were glad we were doing it again. This is two boys, one of which is now 15-year-old teenager! Who would have thought they'd miss time with their mum. 

 

I still feel guilty about what I can't do (I think that is imprinted in my mothering DNA), but I know my kids appreciate what I can do. Your ability to be a mum is not measured by attending 16 different after school activities, or every play. Its about doing what you can.  Putting in the effort to show them how much they mean to you, to show them they are still special.

Some lollies on their pillow when they come home from school.  Bringing them a hot chocolate in bed.  Making their favourite meal (even if it is foul tinned spaghetti).  All of these little things show that you care.  That you think of them even when they are not around. All of them are things you can do even when you are ill. 

Being ill makes you re-examine what it means to be a parent, it doesn't make you less of one. It gives you a chance to work out what is important, to find a new way to be with your kids, and in many ways your kids will be the richer for it.

Cheers

Michelle :) 

(This is a re-post of an article I did for the Dysautonomia support group 12 More Pages in 2009).

Grief and Dysautonomia

I remember reading an article early on in my studies about a woman who was grieving the loss of her husband. Only her husband was still alive, but had developed Alzheimer’s disease. Everyday this woman was morning the loss of the man she loved. The man who was disappearing day by day, week by week, but was still sitting there in front of her. I found this article the other day and something in it hit me hard. This scenario is played out everyday for people living with chronic illness although in our case the person morning the loss is you, and the person you are grieving for is yourself.

It sounds strange to say you are grieving yourself. Grief is traditionally related to the loss of a loved one. But what we often forget is that grief is about loss, any loss. When we lose a job or perhaps a relationship we talk about anger, feeling upset or perhaps betrayed, what we don’t realise is that we are actually grieving. There are different types of grieving and grief events. Grief when you lose a loved one has a sort of in built time limit. It’s not that you actually stop loving or grieving for the person, but that the grief becomes a little bit easier to bear with each passing day. There is truth to the old adage time heals all wounds. We need to be able to do this to be able to cope in the here and now. To sustain that initial grief over time can become debilitating and destructive to a person on many levels. It’s not to say that you don’t become upset at certain times, the holidays in particular can be tortuous, but the overall level of grief diminishes and becomes manageable.

But what do you do when the event that brought about the grief in the first place never leaves? How do you deal with something that can cause little losses (and sometimes big) every day, such as a chronic illness like Dysautonomia? Living with Dysautonomia you are constantly reminded that you are no longer the person you once were. From the moment you wake up, each and every morning is a struggle. Just to get out of bed and dress you are reminded every step that you aren’t like other people. Like it or not you are sick and to differing extents, disabled. Each day you are reminded of your loss. It's almost as if you just get that wound to your spirit to heal over and someone comes along and rips the scab right off, leaving it raw all over again.

With chronic illness you may lose many things, your job, your friends, your house, your financial independence, but perhaps the biggest loss living with chronic illness is the loss of You. By that I mean the You who you once were before you became ill. The picture you had in your head of You, and where you fit in the universe. It’s your own personal picture not the one other people have, which can sometimes be dramatically different to our own. It’s often not until you are faced with something like illness, that you realise that you did indeed have such a picture, one to which you were particularly attached.

I know this only too well. I had developed a nice little picture of me which I rather liked. I had finally come to a place in my life where I was happy with my career, my family and life in general. I knew who I was, where I fit in and where I was going in the future. Other people had pictures of me too, wife, mother, daughter, sister, friend….. Then along came Dysautonomia and the Michelle I was died. I know that sounds rather melodramatic but it’s how I felt at the time, and to a certain extent even now. That person I was six years ago is gone. I catch glimpses every now and then but the me I thought I liked, the me I thought I was, the me I thought I wanted, is long gone.

We hear about the stages of grief: Denial, Bargaining, Anger, Depression and, perhaps the most elusive, Acceptance. The funny thing about grief is that it is not a nice clean process: step 1 denial, step 2 anger…….step 5 acceptance. Instead it’s: step 1 anger, step 2 sadness, step 3 pissed off, step 4 really pissed off, step 5 denial, step 6 immerse yourself in Bold and the Beautiful (denial in any other language, or insanity), step 7 bargaining, step 8 depression, step 9 chocolate binging……and so on. Its a messy process and it’s even messier when there is no finality to the loss. When you think you are finally getting a handle on what has happened to your life Dysautonomia can jump up with a sucker punch, to remind you that the loss is still there and the process begins again. There can be many loses when you are ill. Loss of self, loss of friends, loss of family, loss of work, loss of financial security, loss of place, to name but a few, and it can often feel overwhelming. It doesn’t help that you are ill and exhausted and have very few reserves left to deal with these changes.

For me, it was like someone was taking little bites out of me each day: reliability gone, independence gone, punctuality gone, intelligence gone, privacy gone, mothering skills gone, wife, who’s that?, driving gone, coffee with friends gone, dignity gone…….and on and on and on. Each of these loses seemed insurmountable at the time. I had the tears, the anger, the swearing at the universe, I had it all. I’d always been in control, I’d always been independent, I was always the one other people came to for advice and support be it professionally or personally. I could juggle it all with ease. So who the hell is this pasty-faced, fog brained woman in mirror, I see staring vaguely back at me everyday?

What can be particularly hard is that other people are often unable to understand our level of grief. Hell, often we don’t understand it ourselves. I often feel whiney, even now, when I complain about my lot in life. When someone makes one of those comments like “well at least it’s not cancer” or, “I’d love to not have to work” it undermines our right to feel what we are feeling. We are not asking for pity and it’s not about who’s experiences are more worthy or legitimate. We are entitled to feel angry, upset, lost. It is completely normal to feel what ever you are feeling when you experience such a life changing event. We are NORMAL!

So what do you do? I hate those saccharine sweet lines like “When Life Gives You Lemons Make Lemonade”. Do they realise the steps involved in making the lemonade? First, get the energy to get up out of bed. Second, get the energy to care that you have to make lemonade. Third, try and find a recipe book. Fourth, get your brain together to remember why you have the recipe book. Five, grab a coffee to get your brain going. Six, forget the reason you had the recipe book out again and tidy up the lounge. Seven, remember something about Lemons. Eight remember obscure fact that Liz Lemon is a character on 30 Rock, and sit down to watch tapped program, forgetting lemonade completely. Making that damn lemonade is a Herculean task and often you need someone to hold your hand and guide you to the 7 Up.

Talk. Talk. Talk. Talk. Talk. We all need to let it out. Being a psychologist myself I’m obligated to say find a psychologist to talk to about what has and is happening in your life. Being a human being as well, I know that not everyone is comfortable with this option. Hell, I was rather offended when my cardiologist suggested it to me. I’m a psychologist I know the drill. Why would I need to talk to anyone? But I did and I’m really glad I did. You don’t have to see a psychologist per se (although we do have many, oh so many, long, years of training), but there are great social workers out there, or some people may prefer to talk to their clergy. Maybe you have a great friend who has the knack, or you can go on sites like DINET.org, or blog. What you do need to do is get it out before it begins to stew and ferment. Talking to a professional outside your family and friends is a great idea because they don’t know you, you can talk freely and they have no stake in things, other than to help you find a path through the maze. You can’t often talk about the issues you are having with your family's reaction to your illness with a member of your family. And we often don’t want to burden our loved ones with our own issues, particularly the darker emotions and thoughts that can arise. Finding support, be it though the Internet or a group you meet with in person, can also help. It’s nice to know you are not alone and that there are others who are having, or have had, the same experiences.

Letter writing is a really useful technique to help organise your thoughts and get out a lot of what can build up inside. You can do it anywhere, any time, and you can do with it what ever way you want. The idea is that you write yourself a letter about what you are feeling. It was a technique I often used with family members of my patients with Alzheimer’s. The patient never saw the letter it was for the families to express what they felt, to let out that raw emotion. Some would come in an read it to me because they just needed to share, and to know if what they felt was normal. Others simply did it for themselves and then either put it away, or destroyed it in a symbolic freeing of those burdens. A letter can be used to help family members understand what you are feeling, or just to let you lighten the load. There’s no right or wrong. I wrote a letter myself last year. I kept it hidden for a long time, believing others would think I was completely insane. But then I gave it to my immediate family and it helped them understand. Then to a close friend. And eventually I posted it on my blog, which was equal parts freeing and probably the most scary thing I have done in my life. It’s like those dreams where you find yourself stark naked in a crowd. I’ve never been as naked as I was the day I posted it on my blog.

There are a number of other ways to manage grief and stress that really deserve their own blogs. Things like: Art which can be a great outlet be it writing, painting or music. (No one else even needs to see it); Music therapy; Yoga; Meditation; Gardening; Relaxation techniques (there are techniques to fit everyone); and, many, many others. It's about finding what works for you.

Developing a new picture of you is important. Accepting what you can’t do and embracing what you can is imperative. Allow yourself to grieve. It’s okay to need someone to hold your hand as you navigate along that path. I am a work in process and I still have those days when I want to crawl into my bed and cry. Being a mum and wife doesn’t often give you that opportunity, so you have to find a way through. Sometimes you just need someone else to give you a reality check, and point out what you do have. For me that happened a few years ago. I saw leaving work in particular, as a huge loss at many levels. Then my youngest son turned to me one day and said “I’m so glad you are home all the time, Mum. It’s way better”. He liked that part of the new me and I’ve decided to embrace it too. I may not be able to bring in an income but I get to spend time all my “good” time with my kids and family now. And that’s a much much bigger pay day.

Cheers

Michelle:)

(Originally written for 12 More Pages.com)

12 More Pages Blogging

In my insanity I have agreed to guest blog for a US web based dysautonomia support group 12 More Pages. This is a fantastic web site (also on facebook and twitter) developed by Tyler Gurney, providing information about the latest research, hints and personal experiences about living with dysautonomia.

My blogs will be an attempt to give some helpful hints and the like, especially with regard to being a mum and wife living with Bob. I stress "attempt" I'm still a work in process myself so I'm hardly the poster child for the successful integration of life and illness.

My first blog is on there as of today titled "Grief and Dysautonomia".

On FB

On Website

For those who can't work out either I'll pop a copy on Bob, under 12 More Pages.

Now I finally have an answer to that hideous question "so what do you do?", where I normally answer "I'm ill so I stay at home" and then get "the look" and the "oh............".

Now I can say "Why I'm an internationally published author. Oh yeah, and trophy wife" (stop laughing David). Just realised I've developed a whole new delusion to keep Heidi company! Woo Hoo!!

Don't panic I'll still be Bobing along, I need to get out my insanity somewhere.

Cheers
Michelle :)