Lifting the Burden of Chronic Disease

I have been going through some changes to my health lately, including high and low blood pressure, lightheadedness and a couple of instances of vertigo, mood changes, sleeping troubles, night sweats and unexplained overnight blood glucose spikes (incredibly cruel when I am on a low carb diet and changing my pump sites daily). I was on high blood pressure medication for about 4 years but went off it about a year ago, after some dizzy spells and low blood pressure. A 24 hour blood pressure monitor revealed that despite a couple of odd bottoming out readings, with all of the spikes I do in fact need to be back on it….

These investigations also revealed through discussions with the doctor, that some of the symptoms may be due to perimenopause, and that just like in puberty, there is probably no predictable way to manage this other than “lots more blood tests” as suggested by the doctor. Have you LOOKED at my fingers? How many more than 20+ finger pricks a day can I do?? How much lower carb can I go? How many more times a night can I set my alarm to wake up? I am hopeful that the Libre may assist, and am currently trying it again after discovering my high doses of vitamin C may have been interfering with the readings on my last trial – stay tuned for more on that.

So….puberty, pregnancy, menopause – thanks for coming…who’d be a woman with type 1 diabetes!!

My doctor is fairly new to me, my GP not my Endocrinologist, he has been with me for 32 years! She is lovely and I changed to her in the same practice as my other one, after the former one made me cry when my 16 year old son and I went for help due to his depression and anxiety in year 12. I was at the end of my rope and we wanted a counsellor referral. She basically said he was lazy and had to stop making excuses and get on with his life….I was in tears as it was a long hard couple of years getting him through high school, with the last 18 months done from home with me as his teacher basically. After that I never went back to her. Great doctor, terrible with people. But this new doctor is sweet and calm and lovely. Not as knowledgeable, but so much better for me however. She was most intrigued by my “insulin thing” and wanted to know if I still had to give myself the insulin! When she talked through the blood pressure results, she said that I should also consider cholesterol tablets. And when we discussed my postural hypotension and gastroparesis, she said “oh my you are complex! You have all the things!’….geez that was a moment of laugh or cry!

And case in point, if you wanted to list it out I do have:

  • type 1 diabetes
  • Autonomic neuropathy, including awful Gastroparesis
  • IBS
  • Gastric reflux disease
  • Asthma
  • High blood pressure
  • Sjogren’s syndrome
  • Arthritis in my knees and hands
  • Neuropathy in my arms and strange focal muscle wasting in my calves
  • Carpal Tunnel
  • A frozen shoulder that never fully recovered
  • Damage to one of my ears
  • Ongoing sinus issues and hayfever
  • Travel sickness and bad reactions to many drugs
  • The beginning of Dupuytren’s contracture in my hands
  • A thyroid nodule

If you were to look at all of that and my cocktail of drugs you could see me as someone who is sick and yet I don’t generally let the burden of chronic disease weigh me down. I guess after 38 years of living with a condition that is cooking you from the inside out, you expect all sorts of things to happen to your body, but it is still a slap in the face each time a new thing happens. If you allow this to stay around, this feeling of fragility, a sense you need to curl up on the couch with a blanket and escape into netflix, you eventually start to miss out on your life. If you let yourself sink under the weight of all the things you have to do just to get out the door, just to do all the everyday things many people take for granted, you become by definition “a sick person”. I know because when experiencing serious depression I have been forced into this couch sitting position.

Being sick allows you to step out of daily life. It means you feel justified to stay in your pyjamas all day, to stop working, to talk about your illness over and over. Being sick allows you to stop adulting. To drop responsibilities and rest. Sometimes when overwhelmed by life, people can want to become sick so much that they make themselves ill. And sometimes mental health problems show up as physical ones. I certainly had that experience when I first had a major breakdown many years ago. I was initially tested for all sorts of conditions, due to physical symptoms – a chronic cough, aches and pains, stomach upsets – all found later to be due to my impending depression, anxiety and panic attacks.

Being sick has its place and sometimes you are just so damn sick you can do nothing about it. If you are really really sick, you will be forced into a role of giving into it. You need care and time. People undergoing things like dialysis, cancer treatment or depression, will find it incredibly tough to pick up and get on with life. Yet there are those moments where even the sickest of us can find joy, and so many instances of people dealing with the toughest of health conditions, who do the most amazing things.

If you allow yourself to stay in the sick zone when you have chronic conditions, ones that just will not get better, or easier, the ones you have to bear like diabetes and its assorted hanger oners, you are doing yourself a disservice. It is important to take the time to have a sick day when you need it, or even more days than that. If you are feeling overwhelmed, struggling with your diabetes, or another health issue, managing mood changes, need some time just to cocoon yourself, it is important to allow yourself this time. But if things slide into a week and then another week and all you seem to do is hang around in Facebook groups wallowing in the terribleness of it all, or talking to people on the phone about how sick you are, then the burden of your chronic disease may be too much.

managing wellbeing and diabetesThe best way I have found to deal with the ongoing burden of chronic disease and its never ending changes is this:

  • when faced with a change in your health like I am at the moment, take some time out
  • do things that remind you how lucky you are in life
  • remember and remind yourself ALL the time, of all the things you have done and achieved in your life, even if it is showing up for the day, or getting up and dressed (I am not saying “just” because sometimes that is an achievement – it is all relative)
  • talk about your struggles, your worries and your achievements – write about it, chat in your Facebook groups and with your friends
  • get a plan of action to deal with any new health issue or problem
  • get up, go out and have a walk in the fresh air each day
  • eat something scrumptious
  • play some music or read a book
  • give yourself a treat – a massage or a movie
  • seek support from other people who get you
  • talk about it but don’t wallow, don’t stay stuck there

If you want to live your life as a sick person when really you are capable of so many things, then maybe you are not as sick as you think. There are people with no legs and arms, completely burnt by terrible fires, living with life threatening disease, who have lived through unimaginable torture – who get on with life and do remarkable things. The size of what is remarkable does not matter. I am not talking about becoming a world leader, or solving the world’s problems. Remarkable for you may be holding down a part time job, caring for your family, or simply being able to get out of bed, get dressed and have tea and scones with a friend.

We are all different and we all have varying capacity for coping, between people and even within yourself. Some days you cope with so much you can not even believe it, and others, the smallest of things can break you.

Don’t judge yourself or anyone else for their need to be sick.

I am not saying you are not allowed to have some time to feel sad, sick, or in need of TLC – we all need this, in fact I think it is vital. But allowing the burden of chronic disease to take over your life is just not worth it. You must lift this weight and see out from under it. In the end, a life lived despite diabetes or any other disease, a life lived with these things, is a life lived well. A life lived so deep under the shadow of sickness that you can not be seen is a life unlived.

In sickness and in health…

Helen xx

8 Comments

  1. Lou Payne on June 1, 2017 at 6:56 pm

    Thanks for sharing Helen. My thoughts are with you innour shared challenging experiences. You have provided great tips, many of which I practice. Having a massage, seeing a movie, time with friends, playing with my puppies, being in a lovely womens group as a CWA lady and fund raising for those less fortunate, and especially connecting with health professionals are the things I do as I also have many complex and very painful health issues.
    More recently I have found the going much tougher. Any additional stressors make living a fulfilling life so much more difficult to achieve. This year I lost my Mum after a short battle with cancer; had a shoulder reconstruction as I fell off a broken stool at work last year; and most recently my Dad had a stroke at Easter ( luckily he has recovered well). During this time friends became my life saving floaties, and I am blessed to have the golden glow of my first Grand child due mid July.
    After Mum passed I started to read Nikki Gemmels book’After’, but I had to stop reading it as her Mum took her life after battling with chronic foot pain, I also suffer from the most awful foot pain. It was important to notice what was making me feel worse, and to put things in place to make me happy. I love doing creative things and often go to various crafty workshops.
    Best wishes and love to everyone who deals daily with challenging health issues.

    • Helen Edwards on June 2, 2017 at 8:09 am

      thanks so much for reading and your very thoughtful and honest comments Lou. You are someone I admire very much for your approach to life and all of its joy and difficulties. You hit the nail on the head with your comments about how you usually manage well but found the going got tougher when you were faced with so many additional and sad events to manage. Losing your mum is just unimaginable for those of us who still have ours. I have lost my mother in law after a long health battle and that was such an enormous impact on my own health and wellbeing. I love the fact you have that golden glow of friends and family and that this light still shines despite the hard parts of life. Much love and thanks again for sharing

      • Margaret Stanley on June 2, 2017 at 10:41 am

        Hi Helen
        Thank you for the article
        It is about time I told you about myself I have type 2 diabetes ,lupus ,discoid lupus ,sjrogrens,and recently diagnosed with mild emphysema.I understand exactly what you are saying about not missing out on life because of chronic disease.When I was first diagnosed with lupus I was really frightened as I knew nothing about it When I improved from being really sick I decided I was not going to let it rule my life so I got on with my life and it was the best I did .I do push myself too far sometimes but am getting better at listening to my body
        What you said about some days we cope with so much and can’t believe it and then some days the smallest thing can break you.That happened to me yesterday 1 thing upset me so much and I don’t know why I let it
        Anyway I enjoy reading your blogs and do learn things as well.I hope you are feeling netter today and have a great weekend
        Marg

        • Helen Edwards on June 2, 2017 at 12:11 pm

          oh hi there Margaret! Thanks so much for introducing a little about yourself and your life. I reckon we all need to go to water a bit when we get major news in our lives that will impact it so much, like a lifelong health condition – lupus is certainly no walk in the park. I admire greatly your approach to life. Thanks so much for reading and taking time to comment 🙂 have a lovely weekend too

  2. Rick Phillips on June 2, 2017 at 10:49 am

    As a person who has 3 autoimmune conditions, blood pressure and a other wacky stuff I can totally relate. My advice? If a doctor will not laugh with me at every appointment I do not go back. A man needs his standards. OK, mine might be low but they are standards non the less.

    • Helen Edwards on June 2, 2017 at 12:09 pm

      I love your standards Rick – that sounds like a great test for all relationships – laughter is so important. Thanks for reading and taking time to comment

  3. Terri Mann on June 4, 2017 at 2:06 pm

    Hi Helen, thanks so much for sharing your story, my thoughts are with you & thanks for providing so many great tips.
    I was diagnosed with Type 2 Diabetes about 3 years ago, I suffer from Occipital Neuralgia which knocks me for a six with unbearable headaches but I see a Neurologist & approx. every 4-5 months he gives me an injection into the Occipital Nerve at the base of my skull ( Im sure you know about this, but just saying in case some people don’t know the condition) and this gives me some degree of relief. I also have High blood pressure, high cholesterol, I suffer from Anxiety & major Depression which in the past has caused me to unfortunately drive away some really good friends who just couldn’t understand why I wouldn’t or couldn’t go out. I also have a cocktail of drugs & after deciding a few years ago I would give them all up! ha, what a joke, I ended up in a bigger hole so I have now decided to not fight the medication but realize without it my quality of life would not be possible, I don’t want to sound like a big whinger as I know how much worse some people can suffer ( I lost my best friend to Cancer recently & that was terrible for her ) but just wanted to tell a little story about me as I haven’t before & to wish everyone on this site a happy day & try to keep smiling….thanks for reading……Terri 🙂

    • Helen Edwards on June 5, 2017 at 10:17 am

      Hi Terri
      thank you so much for sharing your story. What a lot of things to manage. I have lived with anxiety and depression and know how hard it is when you are in the thick of it all. It is so great to hear you are in a place where you feel you can do what you need to manage your life to have the best experiences possible, which is what we all hope for. I am very glad you did share and look forward to connecting more. Helen

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