Dealing with my illness

Posted on Monday, February 7th, 2011 at 7:20 pm

Before reading this article please note that it does deal with some real personal issues and does come across quite negative to start with, that is not the purpose of the article, its purpose is to allow me to be more aware of and be more open about my own health issues to help me better understand them. This is an accurate (as I can write it) account of how I feel most of the time. I would also like to acknowledge that there are others out there far worse off than me, however this is my story and my blog.

Dealing with an ongoing illness is not always easy, but it is something many like myself have to do and live with each and every day.  As a sufferer of a chronic pancreatic illness I know what it is like to have a good and a really bad day.  It is not just dealing with the daily pain and discomfort, but the way in which the illness can place limits on what you want to do that can really be a measure of how you feel and see things.  In addition to the pain there is often the feeling of uneasiness, floating and the shakes caused by always being ill and also the medication that is taken.

Being able to do simple things like dig a hole, fix a fence, make or repair something around the home and so on are things that most will do without a second thought, however with a chronic pancreatic illness these sorts of jobs can be very difficult to do.  Just about every physical activity can result in an increase in pain level and that can be very frustrating as there is still a desire to be able to perform many of those basic tasks.

While I do at times have days where I can perform one or two of the more physical tasks it is always in short bursts of an hour or two and then I have to stop due to an increase in pain levels. These days are also very few so I try and make the most of them when they do come around. At the same time there have been many times where I have pushed myself too far due to feeling a little better, which has simply resulted in me having to be rested for 2 to 3 days after, or if it has resulted in an acute attack it can be 7 to 10 days before I am back on my feet again.  This can be very frustrating when all you want to do is a few odd jobs around the house and property.

While suffering with chronic pancreatic health is one thing, it is the acute pancreatic attacks that worry and scare me the most.  The pain levels are so severe I am exhausted and unable to function at all for several days, weeks or even months after depending on the severity of the attack.  I have not had a child (I am male) and I cannot imagine what it is like to go through child birth, but several female nurses have said to me that a pancreatic attack is a significantly worse pain, while I cannot compare them to check if what they say is correct, what I can say is that an acute attack is a very awful experience to go through for anyone, I have lost count of how many I have had.  My most severe attack I cannot recall the pain, my body went into shutdown and as a coping mechanism I have no recollection of those attacks.

In the earlier stages of my illness and the multiple acute pancreatic attacks I had before developing chronic pancreatic health issues I was taken by Ambulance to hospital for pain management treatment as the pain was so severe we could not manage it ourselves at home.  Over the years my wife and I have been able to identify the early signs of an attack and in nearly all cases now we are able to manage an attack at home with prescription medication at home to reduce the need for a trip by ambulance to hospital.  At home we have a number of strong pain killers that I have been prescribed which we use at the very early stage of an acute attack.  While that will usually wipe me out for the day and several days later it is better than having to go into hospital.

My pancreatic illness is not alcohol caused, I rarely use to drink.  It is not caused by any of the ‘normal’ reasons as advised by my Doctor and Specialist.  After many tests the only thing that the doctors can come up with is just a genetic disorder, though no one else in the family (that we know of) has suffered with any pancreatic issues before.  I am told however I could be the first, I hope not, as I would hate to find out one of my children grow up with a similar issue.

Along with my pancreatic illness I also suffer with depression and severe anxiety disorders.  All of my illnesses can be directly linked with my past employment due to conditions and management, however I do not wish to discuss that part of my life ever again.

Day to day management is a daily process and without my family support it would be a very hard thing to manage day to day.  My support comes from my immediate family including my wife and our children who all help me and understand my daily routines, difficulties and what to do if I have an acute pancreatic attack.  Never do we leave home without a package of medication, everywhere and anywhere that medication follows, to the point that I am sure if we were ever searched by Police it would need some detailed explanation.  I know there are times where I am a burden, or at least I feel like one, although they will never say that, but I can tell and I can understand that as well.  For example I never do anything or go anywhere without my wife by my side.  Of course they will say otherwise as that is what and who they are, my family, of which I love and do cherish each and every day I am with them.

My extended family is also there when needed and are often asking how they can help out, which is great.  However having them visit also increases my anxiety and pain levels as I feel unable to interact fully and unable to be as active as I once could have been.  It can be difficult when they ask me if they can dig this or build that when I feel it is something I could do if it was not for the illness I have.  I realise it is there way to try and provide help and support and again I do appreciate it all, however the feeling of hopelessness grows strong each and every time.

As I said before my illness restricts the basic things in life, this includes what we (or I) can do with our kids with forward planning difficult due to not knowing if I will be well enough or not.  I’d love to take the kids on a holiday via a plane trip for the first time but where to, at what cost and what if I get ill?  I’d be really happy for them to go on a holiday without me but I know they would just worry about me and not really enjoy it.  If I had the means I would arrange a respite where I could be cared by others for a week or so and for my wife and kids to go on a trip and really enjoy themselves, but I know they would not do it.

Days can sometimes be a blur and sometimes be hard to get through, but I always ensure I put on a strong exterior face and outlook to limit and reduce the impact of my own feelings on those around me and that are closest to me.  My depression goes up and down and I do have days where I am happy and enjoy the moments, but these seem to be fewer in number.  I will every now and then slip away to another room to hide my emotions when things get a little too much to handle, this is part of my own coping mechanism.

When we are out and about, like going shopping, going to the movies etc. I am always in a state of high anxiety that lifts my pain levels through the whole experience.  Crowds, questions and noise all add to the growing fight I take with me inside and suppress while we are out, usually resulting in several days after of increased illness, pain and depression.

Anyone that sees me in public will not be aware of my illness or my anxiety which is all part of the process I go through and all part of that external face and outward impression I exhibit for the purpose of simply hiding my illness to others.  I do this as I don’t want to be questioned, I don’t want to be asked and don’t want to be given any special treatment.  My previous work and my pre illness life was quite different with me being more of a leader and having confidence in who I was, what I knew and what i did as well as being very proud of what I did, do and have.  So it is often very hard to come to terms with how I see myself now compared to how I thought I was before.  It is also quite difficult for me to say to people I am ‘retired’ due to ill health when asked what I do, I know that is silly but that is what I feel.

It is difficult for me to have to rely on my wife and children to do things like ask others questions, go to counters, pay for things and do nearly all the direct contact with all others, however at the same time I find it better for my health to do that than to do the direct contact myself.  The direct contact can be too confronting for me which directly affects my health.

Much of my communications with anyone is in writing, via email, sms or similar, yes even my extended family.  This is because I am able to ask the questions without fear of direct immediate response (good or bad) or any challenge to my questions.  It also helps me ensure I write it from the right perspective, which usually results in several rewrites before I send anything along.  While there are times I will use the phone it is 95% of the time an answer to a call received, which are always answered by my wife first, asking who it is, if it is for me and then what the call is about, I then let her know if I will or will not take the call.  When I do take the call I am fine if it is simply just some information but if the call becomes a challenging call such as solving an issue my anxiety can increase quite a lot and flow on to increased pancreatic pain.  Outgoing calls are always limited to direct family members, there has been an occasional call to others when I have had a good day but these are very limited.

Unfortunately with my anxiety I get a fright or get startled very easy.  When the phone rings I jump each and every time, when the door knocks I jump and have raised anxiety all of the time. If the kids or my wife come into the room and I am not prepared for it I will often get a fright and be startled.  If the dogs suddenly move quickly or bark I will get a fright.  These startles and frights are not your everday ones though, it can be an hour or two before I get over them which if it happens in succession can be quite disturbing and have an impact on how I generally feel and also my pain levels.

I have had some really good doctors over the years that have helped me with my conditions, I guess I am lucky in this regard to have had doctors that have understood my conditions and for the most part done excellent and often more than what has been asked.  While it did take a while for me to get comfortable with my doctors, over time I became less anxious around them and communicated with them better.  I strongly believe if you are not comfortable with your doctor then seek another one.  I however only go to my doctor with my wife by my side, I still get raised anxiety going to visit them and could not do it on my own.

I have always in the past been against the taking of any prescription medicine for any symptoms of any kind in the past as much as possible.  In my view I always believed that what may make you ill may also make you stronger, in that, given time your body will fix up any issue if treated right.  This includes even a basic Panadol for a headache, I would resist taking anything anytime.  So once my illness started to take a hold of my life I was against the taking of any prescription medicine at all, but to put it bluntly without them I probably would not be alive today.  I have a long list of prescription medicine that I take now that helps me manage my day and get the most out of each one each day.  My main concern however is the effect it will have long term on my body and organs, but to be honest it is kind of like ‘what came first, the chicken or the egg’.  By that I mean if I don’t take them I will be very ill, if I do take them I probably will get very ill later in life, seems an inevitable destination but I guess slowing it down is better…. plus it gives me the opportunity to live my life with my kids now as best I can.

Tiredness is a big issue for me, it is part of the healing process that is an ever ongoing process for my body.  As my body has its ups and downs, it is constantly trying to heal itself and therefore always busy, meaning a lot of the time I am tired and exhausted when I really have not done a great deal.  This is often the reason, and also the frustrating part of my illness, as it can be this tiredness that stops me being able to fully function and do those things that most take for granted with their partner and their children.  It is a case of making the most out of the good days and resting more on the not so good ones.

It is not all doom and gloom, I do have days where my health seems better, it is those days I try and get a little too much done and often find myself worse off the following few days, it is a case of ‘why did the chicken cross the road?’ in that if I did less when I felt better I might have more good days but what is the point of having a good day and not being able to do a little more.  I guess you have to be there and be like me to understand that.

Keeping my mind active is a big thing for me, so I do go on the computer most days, reading, tinkering, communicating with family and also helping my wife when I feel up to it with some computer tasks, but again I often overdo it and then pay the price with greater ill health.

I also love to drive anywhere, it is one of those things I continue to do and enjoy most of all when we do anything.  When I say driving I mean in the open roads, not city or suburban driving, I mean in the quiet rural country long drives we often go on.  While I enjoy the driving the fact remains that it does take its toll also, with the need to concentrate for long drives I can overdo it quite easily and again result in several days required to fully recover from it.

I use to love to cook, but I am rarely able to do so, just the smell of cooking and preparing food can set off a pancreatic attack which is something I try and avoid at all costs.  We have on a number of times over the years been invited to go out for a dinner or a birthday meal or similar event, however in nearly all cases I have had to leave early due to the smell of food being cooked and provided.  At times I have sat in the car while my family has sat in the restaurant having their meal, it just goes with the territory of the illness, there is nothing they or I can do about it.  I have to be careful what I eat, ensuring low in fat, is not spicy and it does not contain wheat where possible as wheat seems to trigger increased pancreatic pain.  No alcohol and no smoking, my only vice, if you can call it that, is Pepsi Max cola, and even that I am reducing more and more.

Another positive experience I have is with our dogs.  We have four Border Collies and along with my family they are an added reason why I get through each day and each week.  They all know when I am ill and will often react to it, especially our oldest boy Taj who will often sleep by my side the entire time I am ill and in bed.  I try and go for a short walk with a tennis racket and ball each and every morning with them in one of our paddocks, it is something I enjoy and I know they do too.  I really love their comfort, love and devotion to each and every person in our family, they themselves are our kids too, our fur kids who have the run of the house just like our human kids do.

Above all else it is my wife I owe a lot too, I only wish I could provide more for her.  Wifey, as I affectionately call her, is always there, always caring and always supportive, though I am sure there are times when she needs a break which I try and give to her when I can.  Without her I would not have survived and I would not be alive today, I am 100% sure of that and I do love her dearly not just for her care for me but her love.  My children of course also have provided much for me and I do love them all very much for that as well, especially their understanding of my limitations and why sometimes I cannot do what they need or want me to do.

I enjoy where we live and our surroundings.  We have a small property named Eagleburra that I really do feel comfortable living in.  The house is not too big or too small, it is really a just right fit.  We also have a small cottage on the property for family to visit every now and then, and while this is vacant most of the time it is great to have the cottage there when needed, plus wifey uses the space for her art.  Included is two large sheds, one for hay for the horses and Michelle’s horse float and my new (very old) tractor.  The other is a two door three car space lockable garage where we can all tinker with things, like my daughter uses the space to make costumes and 1/4 of it is designated for my wife and younger daughters horse riding stuff.  Having both sheds is great and adds to the reason why I love living where we do.  Being able to look out the window and not see any other buildings is such a great view and such a great feeling, while at the same time knowing me are only a short distance of just 5km from the centre of town.  It really is a great location.

I could probably go on and on but I think this is enough for now, it has taken me quite a while to put this together and to summon up the courage to post it here I may make some additional related posts soon.  Cheers for reading this it has helped me and I hope you got something out of it too.

Share

3 Responses to “Dealing with my illness”

  1. John Mitchell Says:

    Thank you for sharing that. My wife also has CP and suffers with pain like you. It is such a cruel illness and unfortunately very little research. I know neither of you have Pancreatic Cancer, but hopefully the publicity of Steve Jobbs might give that area of the body more publicity and research.

    Have you looked at this forum http://www.pancreatitis-forum.org.uk/index.php ? My wife found it very helpful.

    Take care.

  2. Greg Says:

    Thanks John for your comments. I certainly hope that CP does get more recognition because if it does there might be a better fix for it sooner than later. if your wife is not already a member can I suggest her to join the facebook group for CP at http://www.facebook.com/groups/113289488697074/. The group is a great place to chat with fellow sufferers of CP that have a good understanding of the issues we face daily with the illness.

  3. John Mitchell Says:

    Yes she is a member of a facebook group so you may have come across her.

Leave a Reply