It’s been a few months since my last blog – sorry ’bout that, folks. All I can say is that time flies – whether you are having fun or not!
Since coming off the Lyrica and the Rebif, I have been dealing with alot of changes. The biggest ones were that I definitely feel more like “me”, in that my thought processes feel sharper and clearer. My skin cleared up immensely – what I thought was adult acne for the past two years (difficult adult acne with facial rash and cysts that embarrased me) turns out to have been totally related to the Rebif. My skin is clearer, smoother, glows, and I heal better now, bruise less easily. I am also no longer gaining weight – whether that was the Rebif alone, or the Lyrica alone, is moot.
On the down side, my pain came back in spades -and I began using Sativex regularly. Unfortunately, it just took the edge off, really. The months of August and September I literally spent either at work, or in bed from the pain and fatigue. Quality of life? What’s that??
In late September, I saw my favorite neurlogist, Dr. Short (who treats you like a person, not a case study), and she suggested Cymbalta for pain. I was leery of the idea of it – but my quality of life had been non-existent due to the pain and fatigue, which in turn negatively affected my cognitive abilities – the usual downward spiral of MS symptoms. I agreed to try the Cymbalta after she and I looked at contraindications and side effects and discussed it further with my GP.
I have been on a low dose of Cymbalta now for 4 weeks. While it has indeed helped my pain significantly, I cannot say I feel like my quality of life is any better! In the first 2 weeks, the nausea was so bad, I lost 10 pounds. I have headaches every day (that are beginning to lessen this week finally), sinus pressure, dizziness, hot flashes, shivering spells, pounding heart rate, and insomnia. So, while the pain has gone from a daily 9 or 10 to a daily 1 or 2 level, the side effects are killer! And I am discovering that taking oneself off the drug is not as easy as the doctors allude. There are serious withdrawal symptoms that are not to be taken lightly! Even so, the drug side effects seem to be lessening somewhat over time as my body becomes more accustomed to the drug (still a low dose), and the pain (which I started taking it for in the first place) is controlled as a result. I am willing to stick it out for another month or so before I make any decision about staying on it or not.
Right now, I am on a week’s sick leave from work. I am weepy, exhausted, depressed, foggy, and lethargic. I can’t focus, and am having trouble understanding problems put before me, including keeping things organized at work. I am struggling significantly at work – mainly because I am trying to do a job that I have not had any training for whatsoever, so I am flying by the seat of my pants, and at the same time struggling with my health. That is stressful enough alone, without adding health issues into the equation. My GP, who is awesome, is concerned that I am completely depleted and beyond exhausted to the point of clinical depression, because I really have not taken any personal time throughout this past year as my health struggles continued on a higher level. She suggested taking at least 6 weeks to focus on getting my levels back up, but I just can’t afford it right now. (Being a single mom with 2 teenage boys is very expensive – especially these days with all the costs soaring through the roof!) So we are starting at one week off work, with the focus to get me rested, and re-assess weekly.
I have been struggling for weeks now with the issue of how much longer I can continue working, as the stress caused by my management position (largely due to the lack of training) is taking such a toll on my health. I can’t afford not to work – but can I afford to keep working?? Can I afford to be on disability with today’s costs of living? What are my options? I feel so very trapped at work, doing a job I dislike immensely, struggle to understand and keep up with, and not seeing a way out without shooting myself in the foot.I want to continue working, but definitely need to reduce the stress caused by my job – but how do I do that? Getting the training is not easy – and there is always an obstacle. Switching jobs – not a clear option right now, though I have put feelers out, it will take time – maybe years. Part-time work – not an option right now.
My GP took such a burden off my shoulders. She told me that right now I am in no position to see things clearly or make any decisions, because I am so depleted – so we will work together and take things one step at a time to determine the best course of action for me. First step: get me rested and sleeping again. Next step: Get my quality of life back by investgating the sources of stress. And so on.
All I can say is that I am so grateful for supportive friends, supportive family, and a supportive medical team. I still have to push and question everything, but at least I know that when I stumble, I am blessed in that I know someone will hold out their hands to help me up.