Pain Pain is debilitating, our natural human response to pain is to escape from it, get rid of, or avoid it. The reality for many pain sufferers’ is, it is an unavoidable and part of everyday life. Learning to ‘Be With’ pain, illness and distress is a challenge. I find managing my chronic pain is wearing and exhausting and I do go to my dark place. Quiet often, my resolve to stay alive and lead a meaningful purposeful life gets severely tested, my pain does eat away at my determination to stay strong, and my resilience to keep going diminishes. The breakthrough in learning how to ‘Be With’ my pain came when I realised that I was inadvertently allowing my resistance to my illness the energy that it needed to gather momentum.  In my desire to avoid and get rid of my pain and ‘Do’ something about it, I was getting sucked down by it. The metaphor of unconsciously allowing energy to gather momentum has helped me change my frame of reference and shift my position. My pain is what I deal with, it does not define me. Finding ways to dampen down the intensity of pain and functioning I believe is key.  For me, being able to function means that I choose to take pain medication.  The dosage I take, varies according to my levels of my pain.  I know that when I am bad, I need to get help and therefore I “Get the big guns out”. I am very aware of the side effects that the medication has on my […]

Managing the symptoms and side effects of my autoimmune disease is a juggling act. Like many sufferers of an autoimmune disease I am prescribed a wide variation of medication and as with all medications they help manage the symptoms but they also have side effects. Often the side effects are not well documented and will vary from person to person. I am prescribed Prednisolone, this type of medication is widely used to manage inflammatory conditions, infection, allergies, certain cancers and is commonly used to prevent organ rejection after a transplant. Prednisolone is a corticosteroid drug which helps reduce inflammation and dampens down the immune system. My dose varies from 2.5 mg when I am doing well, up to 40 mg when I am unwell. I find this medication helps with my mobility and my energy levels, however, reducing the dose has to be done slowly and gradually as it causes withdrawal symptoms. The long-term side effects of Prednisolone on my system are osteoporosis, gastrointestinal problems, stomach ulcers and liver problems. I have been prescribed Methotrexate for the last five years and this medication is commonly used in the management of autoimmune diseases and cancer. Methotrexate is an antimetabolite and it works by suppressing the immune system to help reduce joint damage, in the hope that it will preserve the joint function. It also slows the growth of cancer cells. I take this medication in tablet form once a week and I will normally take it on a Monday morning. The […]

Coping with flare ups and the bad days. Coping with my Autoimmune diseases is work in progress, no two days are the same. One day I can wake up feeling physically and emotionally okay, on these days I manage basic tasks, showering, getting dressed making a cup of tea and pottering around. On a bad day when I have a flare up (I feel like a tourniquet has a strangle hold on me, my joints swell and are painful to touch). My body feels like I have been run over by a heard of galloping wilder-beast (metaphorically speaking) on these days basic tasks are virtually impossible, getting out of bed and standing are a huge effort. My arms and legs feel so heavy and walking is painful. In the early stages of my disease, waking up to a flare up or a bad day was extremely upsetting and frustrating, I would burst into tears and become very morose. My thought process would turn into persistent circular thinking and rumination. I would think about it. And think about it. All this thinking did, was deepen my sense of helplessness and depression I would become irrational and beat myself up internally. Had I eaten or drunk something that disagreed with me? Had I done too much the previous day? What had I done to trigger this episode? Breaking my pattern of circular thinking and rumination was very hard and I still struggle with it. I am learning to turn down the volume […]

In 2008 I was diagnosed with complex mixed connective tissue disease (Scleroderma, Raynauds Phenomenon/Systemic Sclerosis /Myositis/ with inflammatory Rheumatoid Arthritis overlap). This disease came as a bolt out of the blue. One day I was fine, the next I was unable to move, my joints were swollen and I struggled to stand. Here began my long, painful and frustrating journey into the autoimmune disease abyss……… My local GP ran blood tests which were inconclusive. He put me on a high dose of Prednisolone and NSIDs and referred me to a Consultant Rheumatologist at a local hospital. I was extremely fortunate to have private medical insurance at the onset of my disease. My consultant ran every test imaginable and I was diagnosed in a short space of time. I was referred onto the Royal Free London Hospital under Professor Chris Denton and his team. With that initial diagnosis, I believed that my life was over and that I had been given a death sentence. I fell into depression. I felt very sorry for myself, my health deteriorated rapidly. I lost two stone (12.7 kg) breathing became difficult as my lung function deteriorated and my hands started to tighten and retract into claws. My emotional health mirrored my physical health and I withdrew into myself. Life was a struggle and I contemplated suicide on numerous occasions. The single motivating factor that prevented me from taking my life, are my beloved sons. In my head, I bargained with myself to just keep going […]