I finally feel able to write about 2017. It has probably been the hardest year of my life and I ended up surviving it by hibernating inside myself and shutting out the world. That was probably very unhealthy, but it was the only way that I felt I could cope. On this last day of the year, I know that I need to do something different to go forward so have made a plan. Until a few weeks ago, I was going to ignore New Year’s Eve, by going to bed early and shutting it out, but that would be continuing in the same mode that I have been so I had to figure out a different way. I am not going to make the mistakes of previous New Year’s Eves and say goodbye to the bad old year and hello to a better one, because I can’t predict what will happen and I don’t know if it will be better and if it is worse I will feel let down, so I am going to try and just change me and how I react to whatever happens. But before I explain that, I need to say what it was that made 2017 so bad.
The year started stressful because I had to change benefits from DLA to PIP. I understand that the government have to assess people for certain benefits, but trying to get someone who is ill to fill out a very big booklet discussing their illnesses and the effects that those have on their life and then going to a face-to-face assessment that can last up to 2 hours is plain cruel. If you have enough evidence from GP’s, hospital consultants, other health professionals and social services etc that should be enough, but it isn’t. The stress and decline in health that this process does to an already sick person is massive. Many like me are too ill to fill out the booklet and have to find an advocate to do that for them, often for a fee and then have go through this process again for someone to attend the face-to-face assessment with them. This whole process took from late December to the end of February and by the end of it I was exhausted and very unwell.
Literally as Tammy and I were driving home after the face-to-face assessment the GP surgery phoned wanting to see Tammy urgently the next day. Tammy had undergone a brain MRI to previous week, because she had been smelling non-existent cigarette smoke for the previous few months. So by receiving that phone call we knew there was an issue. I being a glass is half empty kind of a person was expecting the worst and Tammy was more positive. Sadly, the worst was the reality. Tammy was found to have a brain tumour. The next few months were spent having further tests and the outcome is that she has a low grade glioma (non-malignant) at the back of her frontal lobe in an area that they don’t really want to even biopsy, let alone operate on. Her type of tumour will grow into a high grade (malignant) one but no one knows when. So she is currently having regular brain MRI’s and so far it has remained stable. This has added an immeasurable amount of stress on us. Tammy already was struggling with trying to keep working full-time whilst dealing with some quite disabling auto-immune conditions and the side-effects from the medications for those. My health had been considerably worse since 2013 and Tammy was my carer, which the thought of her not being able to be that for me anymore and her getting worse herself was another stress. On top of those physical conditions to deal with, we now had the emotional stress of facing the very real fact that Tammy could die or be left very disabled.
The fallout from the brain tumour diagnosis included Tammy losing her driving licence. This was extremely difficult for us with me being unable to drive because of my health conditions, so we were left with two cars and no drivers. I cancelled some of my hospital appointments that were too far away to afford a taxi for and all our shopping had to be done online. Tammy had to get taxis to and from work which luckily the government reimbursed some of the costs for through their Access to Work scheme. However we still spent a vast amount of money on taxis and until you don’t have access to a car, you have no idea how much you rely on one. At the time I am writing this, after much back and forth with DVLA, Tammy has been issued with a temporary driving licence that has to be renewed every year, but that is better than not having one at all and has made our life so much easier.
The rest of the year was spent trying to practically deal with our new reality, whilst also getting our heads around it emotionally. We set up a downstairs bedroom by swapping an upstairs one with the study and have been looking into ways of turning the downstairs toilet into a wet room. We renewed our contact with social services who have helped us in the past and the end of that process has given me a part-time personal assistant to help me around the home and to take me to appointments that Tammy normally does and also a budget for Tammy to pay for a monthly massage at home which she has found very helpful. Bethany my oldest daughter has recently moved to Salford and she is now a named driver on my car insurance so we also now have another driver. And Tammy had some counselling and I am on the waiting list for some.
However this all has had a huge toll on my health which wasn’t very good to start with and I reacted by going into hibernation mode and also being quite bitter and angry with everyone and everything. None of that was healthy for me, my family or my friends, so I have formulated a plan to try and get some health and sanity back!
First and foremost I am going to focus on me. I am going to be selfish. I have spent my entire adult life putting others needs before mine – that can even be shown by my chosen careers of nursing and counselling and my volunteering as a Samaritan. I don’t want to stop that side of me, but I need to rest it for a while, because I can’t help others if I am unwell, bitter and angry.
My main issues are my physical and mental health. As well as the stress of this year making them worse, I am also menopausal which is majorly contributing to it. There are three books and an online course that I am going to use together to try to help myself. I will just mention them briefly now, but will discuss them in greater detail as I use them.
The protocol in this book is something that both Tammy and I are going to start from the 1st January. We both are in poor health and we both are on way too many medications that cause more problems than they help so we wanted a more natural approach. I have been on a strict migraine diet for a few years and it has helped a bit but not significantly. The Wahls Protocol is stricter and it has three levels and we are starting on the easiest one. We will cut out gluten, dairy, eggs, sugar, processed foods and increase our fruit and veg content to 9 cups a day. On top of this, she suggests increasing water intake, certain supplements, incorporating meditation and exercise into daily life, getting better sleep and removing toxins from the body by dry brushing and massage and from the home by using natural cleaning products, natural toiletries, earthing and getting house plants. The last thing this Protocol requires is keeping a daily journal so you can see both your progress and also where you are struggling. As we are starting this on the 1st January, we have been eating all the foods we are giving up in abundance the last couple of weeks, so we now feel very sick and ready to give them up!
The 4 Pillar Plan is very similar to The Wahls Protocol, but it is simpler, but is a good read and I recommend it to anyone ill or not to improve their wellbeing for both now and the future.
The Wisdom of Menopause is a book specifically for women going through the menopause, but it is again very similar to the two books above. It is a wonderful book. She really pushes the idea of putting yourself first and the extra things it mentions unlike the other books is removing toxic and draining people from your life and getting your finances in order, both of which I have been doing.
And finally the online course I am doing. I have had ME/CFS for over 25 years and I have always battled to prove that it is a physical and not a psychological condition. In doing this, it has meant that I have ignored some research that might actually help me. There is a branch of research that is showing that ME/CFS and other related conditions such as Fibromyalgia are a result of PTSD. This PTSD has put the body into a state of chronically releasing stress hormones and those have a detrimental affect on physical health. So the ME/CFS still is a physical condition with many symptoms, but the cause is not viral but a PTSD response to that initial virus or some other trigger. A few years ago Tammy was told by a clinical psychologist that her ME/CFS and Fibromyalgia were a result of PTSD. Tammy was angry by this and cancelled the sessions. If the clinical psychologist had explained it how I just have, Tammy might have been more accepting. It’s just us sufferers have had to fight for so long for recognition of our illnesses that we have fight against anything even bordering on psychological. However this approach has struck a cord with me. In 2006 when I was diagnosed with Fibromyalgia the Rheumatologist handed me a leaflet and it explained that one of the causes of Fibromyalgia was the chronic stress caused by child sex abuse. And also my own research into Adverse Childhood Experiences and chronic adult ill health has backed this up. So I felt that this course was worth the investment and so far I have completed the first module and it has been very helpful and informative. The course is the Energy Excellence Course and is run by Amir Norris. It also comes with a money back guarantee if you don’t improve, which was the icing on the cake for me.
As well as these things I am going to continue to do my daily mindfulness by using both the Headspace and Calm apps both of which I thoroughly recommend and also my daily yoga on the Wii Fit. I am just going to take life one day at a time and overall try to be a calmer person and that will certainly please those around me!
Happy New Year!