Living with Chronic Illness and Chronic Pain
From the Editor…
It has been a long time since I published anything in regards to my ongoing dealings with Multiple Sclerosis (MS); not because problems no longer exists, more because of the feeling that nothing would/could change, hopelessness I guess would best describe it. It is quite difficult for me to admit to hopelessness, I was raised to be a strong woman, capable of surviving and thriving in any circumstance and it is because of this that my first reactions when being diagnosed with MS nearly 4 years ago were to fight back.
I seeked out treatments and fought to have them done here in Manitouwadge (and by fought I mean quite litterally arguing and demanding to have them here where I could continue trying to make a living in spite of my physical limitations), the instances in which a doctor in Manitouwadge first suggested anything proactive, so other than stopping a treatment or medication in lieu of nothing, were rare, I can’t recall any such instance specifically in fact but I’d like to think they must have occured. Some of the treatments/medications worked, some did not, some symptoms have changed but many of the most limiting symptoms continue. Now for months I have been tolerating as my doctor reduced medications which made my pain levels tolerable and allowed me to enjoy life, enjoy working, enjoy playing with my kids, enjoy hobbies like walking the dog or skiing… It has been some time since any of those were included in my life and these days I am challenged just to maintain my workload and bring home enough to make working worth the trouble.
One of the most frustrating circumstances has been the fact that oral pain medications seem to have no effect on me, I would by this point probably think I was crazy were it not to refrences of other people who also have this experience and even studies that have been done to groups of patients with MS who were not getting results with oral meds but the same meds delivered by injection sub-q or IM did have positive results. I found this when, after about a year of trying to get any doctor to look further in to this, rather than just dismissing it, I turned to the web for answers and realized that it was not unheard of and I shouldn’t be getting treated like I was imagining or exagerating pain.
Now I am torn between going to the emerg to try and reason with yet another locum, the doctors which service Manitouwadge when our regular docs take well deserved time away. Though everyone appreciates the work of the locums, to keep our community serviced in health care, people like myself with chronic conditions can get very little care from most of them because they just don’t have the time they want to get the low-down on our illnesses/symptoms/history. I can understand their frustration but, from the perspective of a patient trying to live a decent life, I wish they could understand that they have accepted, in working as locums, that there will not be the time to get all the information first hand and that they will have to trust that if someone is bothering to go to the hospital (which patients are not paid to do – for us the hospital represents a last desperate attempt to access alternatives to dealing with pain, fatigue, or other debilitating symptoms; for me personally it represents hell and often wasting time that results in no more than missing work and coming out feeling worse than when I went in). I will be giving it yet another try however having read a very insightful post in a blog by a Dr. which has given me the courage to believe that perhaps today will be the day that I land on a decent doc who will actually realize I am there because I NEED to be, not because I want to be, that may realize that no one would ever waste their time in an emergency room unless absolutely necessary and who may be willing to help in spite of what my own doctor has, to my detriment, been doing for several months because try as I may I have NOT been able to function through the pain which feels like rusty steel rods being shoved up my legs, I have not found a magical way to improve symptoms of fatigue that I used to have B12 shots to improve (not even sure why that was discontinued as I never expressed that my fatigue had in any way lessened in severity or been miraculously cured), and I am not willing to put up with either any longer. Tomorrow is a big day for Manitouwadge, I want to be able to cover it in the best possible shape that I can. I have in the past been given adequate meds by doctors for a day (because I wanted to ski with Emeraude & Lloyd) or by my regular doc who, for example, had increased my meds for a couple months when I was starting my business aparently thinking that was worthy of my having adequate pain releif – why is it that I must justify my need for pain relief or my right to a quality of life and who are these doctors to be deciding when my goals are up to their standards of being important enough to provide proper medications?
I have a right to quality of life, having a chronic illness does not lessen that.
To read the incredible Letter to Patients with Chronic Disease written by Dr.Rob which inspired me please go to http://distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease
If you have a chronic illness and feel that living in Northern Ontario has contributed to either improving or worsening symptoms I’d like to hear your opinions, please share them below. Especially useful is sharing details of support groups, programs or clinics that have contributed to positive experiences or maintaining your quality of life as these could help others in your situation change their lives. Personally I have received incredibly respectful treatment at Wilson Memorial in Marathon but I do not live in Marathon and expect to get that same treatment here in Manitouwadge (not to say it never happens here, it just hasn’t been the norm of what I have experienced – those that have been by my side through it can vouch for this).
