A Heartfelt Letter To Whom It May Concern … I Need To Get My Life Back!

Sometimes life with chronic illness can be overwhelming. It’s not always because of your disease either.

It’s often all the appointments, including doctors, allied health professionals, equipment trials, dealing with government departments, routine tests and procedures, etc. It can become a full-time job. Your body becomes your business, your place of work, and you can quickly feel as if you are losing all sense of illness/work/life balance.

In fact, you wake up one day and realise you no longer have a life, and each days agenda is being determined by anyone and everyone, but definitely not by you.

My Epiphany

This was my epiphany when I woke up today. I had a list of upcoming events, life changing events in many regards, running through my mind. Most of them were medical related, and even the ones that could be considered normal life decisions were  being fuelled by my medical situation.

I sat in my favourite wing chair at 6am, looking out onto the garden as the sun rose, sipping my morning cup of tea, and realised I had allowed myself to become a full-time patient. I had a team of caring people, including doctors, nurses, care agencies, allied health professionals, all trying to fix the unfixable and just making me so busy I was being pulled from pillar to post to try this, try that.

So many things were not sitting right with me. Some were perfect, and I knew I needed to pursue these, but most were just not right. Not for now anyway. Not if I had any hope of reclaiming some semblance of a life.

Reaching Out

Something had to change, and I knew there was one person I could download to who would hear me and honestly tell me if I was being sensible or stupid in the approach I was about to take.

My occupational therapist is amazing. She has managed to have every equipment request approved and has always understood the seriousness of my health. Often, before I have. She’s encouraged my writing and other patient advocate endeavours.  She’s always been on the end of an email or phone call whenever I needed her.

So, it made perfect sense to shoot her an email. However, as I began typing it, I realised this was more than an email. This was a letter. A “To Whom It May Concern” letter. Perhaps a “Dear Diary” journal entry. It was my line in the sand. My something must and will change moment.

To Whom It May Concern

Hi,

Sorry, this is a long email, so please don’t rush to read it.

I’ve been thinking a lot of things through overnight in relation to my overall health, housing,  bedding, finances, upcoming Specialist appointments and Peter’s health and needs, as we both deal with him being in his 80s and the changes that alone is bringing to our lives.

You’re right. We have a lot going on. Too much, if I’m honest, and I need to strictly prioritise and go at a pace that allows time for me to relax and recover from each event. I’m only 5 months post my major abdominal surgery, so lots of recovery is still needed with that, let alone anything else.

What I’ve decided not to do:

1. I’m cancelling the nerve blocks until I’ve seen my pain management specialist in  October. I really feel we need to be blocking l5/S1 not L4/l5 and I don’t want to go through the effort and recovey required from the block when I’m 90% certain it’s not going to work. Plus, lying on my stomach and having the pressure of the needle being pushed into the spine is too early when my abdomen is still trying to heal. Pain management specialists are experts in blocks and can do them for me, usually in hospital, which may be safer under the circumstances. I’ll keep you posted.

2. I’ve decided I don’t want to have an electric bed with a companion bed for Peter or sleep in single beds. From a life and well-being perspective, I’m going to stay sleeping in the same bed as Peter until I die or end up in a nursing home. Sometimes life and love are more important, and to be honest, I’m going to be uncomfortable no matter what I sleep on.

Our current bed is so easy to make, and Peter can regularly turn the mattress. I’ve often found that the disability options make the patient more disabled and for me, rails at the side of the bed stop me from being independent when it comes to making my bed, etc.

The only thing I would be interested in is a topper for our existing mattress to help with bone pressure or a new suitable queen-size mattress if NDIS would fully fund it.

3. Carers are great, but it’s also exhausting having people in your home all the time, so for as long as I can, I’m going to use carers minimally.

What I am going to do…

1. Attend Important Specialist Appointments:

• Ophthalmologist 
• Pain management Specialist 
• Rheumatologist 
• Gastroenterologist 
• Orthopaedic Surgeon 
• GP
• Endocrinologist 
• Metabolic testing to check how my body is metabolising medication 
• Optometrist
• Podiatrist 
• Registered Nurse
• Dentist
• Hematologist 

2. My major health focus and my specialist concerns (aside from pain management), are:

•  My liver as it’s so close to becoming a fibrosis situation.
• Bowel Function
• Prednisone dosage
• Eyes/Glaucoma 
• Low Grade Lymphoma

3. My Life/ Well- Being Focus:

• My Support Forum
• My Blog
• My Podcast 
• Volunteering online for Arthritis Queensland moderating their online support forum for parents with children who have Juvenile Idiopathic Arthritis.
• Spending quality time with Peter and trying to get out a little more for car drives, picnics etc.
• Having friends over for coffee/tea.

Well, that’s been therapeutic writing it all down and seeing why I feel a little overloaded.  You’ve done well if you’ve read this far.

Anyway I hope the above makes sense and gives you perhaps a better insight as to where my thoughts and priorities are at the moment and why I need to draw a bit of a line in the sand.

Thanks again for your amazing support. I’m so glad to have you on my team.

Take care

Sam

 

So Therapeutic

I have never felt so unburdened. The email/letter took such a weight off my shoulders and gave me such a sense of peace.

The icing on the cake was the response I received within minutes from my occupational therapist. Not only did she immediately read my long email, but she immediately phoned me to say she completely agreed with my thought process, and she appreciated how clearly I had expressed my decisions.

She also let me know we can have a normal, medically helpful queen-size mattress funded, and we can have free trials of a couple of different types to make the best decision. In fact, these trials have been organised, and we can trial them for a few night’s in the comfort of our own home.

I am sharing my letter as I know many of you feel overwhelmed by your situation and often feel pressured by the medical profession to perhaps agree to plans that you are not completely sure are right for you.

You don’t have to agree to everything. You can question, you can ask for time to think about your circumstances,  you can say “thank you but no thank you”. You can take control of your life.

I know some of my decisions may result in me continuing to live with my high level of pain, but I also know it’s highly unlikely the options put before me, in the hope of reducing pain, are likely to work. I’ve tried so many of them already, so my thought process is based on patient lived experience.

After numerous phone calls to cancel some appointments and replace them with essential and helpful appointments, I could feel my stress levels reducing. Surprise, surprise, I could also cope with my pain levels in a calmer way.

I’m looking forward to reclaiming my life and getting the balance back between managing my health and having time to enjoy well-being activities with my husband and friends.

If nothing else, take some time to re-evaluate your priorities and medical pressure points. If you need to make some changes don’t be afraid to make them. You may be surprised how much better it will make you feel.

Take care,

Sam xx

Medical Musings with Friends

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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