Note: I am not an avid fan of medication, however it has had its place and purpose in my life. I do use and am exploring alternative therapies and methods for pain and fatigue management. Please discuss with your doctor or consultant to receive professional advice on medication .
I am currently held upright by a Synthetic Scaffold of Gabapentin, Duluxotine and hydroxychloroquine. Quite high dosages, in fact. Following my initial diagnosis, it took me about 18 months to find a dosage and combination of medication that enables me to live relatively comfortably. I was once prescribed one particular PRN pain medication. I was taken into the consulting room at the pharmacy and had to sign papers accepting all responsibility for side effects. RED FLAGS HERE! I took a few dosages and each time I suffered such severe stomach cramping. I disposed of that particular prescription. These effects were just SOOOO wrong.
For me pharmaceuticals are not a 100% solution, although I currently rely on them In order to ease the pain. I have learned to live with flair-ups, pain, discomfort and fatigue by using more natural coping methods. However, as a single mum needing to raise a child, pay bills and provide food, I have made the decision to continue to take high dosages of medication in order that I may attend work. I also have chosen to prioritise work over the quality of my home life-for now. As I have limited energy I needed to make a choice of where to channel that energy. When not at work I spend much time cocooned the sofa surrounded by unfinished DIY projects and ill attempts at trying new hobbies-either my hands hurt when trying craftwork or I am too exhausted to do anything at length that requires concentration. Housework is done with a lite touch -I am learning to accept and ask for help. I only cook on days I do not work ∼when I have the energy ∼and always make double batches. I freeze extra portions when possible case of an emergency flare up.
Winter is more difficult. My pain seems to be exacerbated by the cold and my face often hurts (like metal plates consistently being wedged under my cheek bones). POTS, vertigo, Raynaud’s syndrome and extreme fatigue interrupt my daily life. My social and recreational life is out for the count. I can not muster the strength to keep up my dance classes nor go out for dinner with friends. When I sleep, I never seem to get enough and cannot recall when I last awoke feeling refreshed.
Most work days, I drag my limped body out of bed, wash my face in a fog and try not to be late. My office is near to my home and my employer has made reasonable adjustments to accommodate my needs, enabling me to work from home some days. If it weren’t for this and the fact that I work with very supportive, caring people, I would not be able to work. I have Wednesdays and weekends off. Perhaps, if I did not need to work, I may not choose to be on so many meds-if at all. I do worry about the long-term effects and if the meds precipitate some of my symptoms. However, for now, until I am able to financially afford a complete change of lifestyle, I have chosen to be propped up by this synthetic scaffold in order to keep my pain at bay∼perhaps too there is a strong fear element of not wanting to relive that awful raw state of agony and torment.
Thank you for reading, FreeMeFibro
∼FreeMeFibro∼Living with #ME #MyalgicEncephalomyelitis #Fibromyalgia #Lupus #Spoonies #CFS #ChronicFatigueSyndrome #Raynauds Syndrome #chronicpain #autoimmune diseases