Husband has multiple sclerosis, I am having a tough time dealing with him lately!
Question: I feel he is being lazy. Doesnt want to do anything, he has no energy all the time. I understand the symptoms of MS but I dont understand why he is like this day in and out for years he isnt showing signs of good health. Everything I read points to the meds should help him live pretty normally.
He is only 31 has had RRMS for 6 years, no insurance, on Rebif.
What can we try? Any words of wisdoms so I dont end up burning out and being angry?
Answers: I feel he is being lazy. Doesnt want to do anything, he has no energy all the time. I understand the symptoms of MS but I dont understand why he is like this day in and out for years he isnt showing signs of good health. Everything I read points to the meds should help him live pretty normally.
He is only 31 has had RRMS for 6 years, no insurance, on Rebif.
What can we try? Any words of wisdoms so I dont end up burning out and being angry?
The drugs are no doubt largely to blame here. Also, the condition itself can bring on these symptoms you are describing. However, I would say these are reasons 2 and 3. Being diagnosed with a terminal illness has a sort of pattern to it. At first, it is difficult but not overly present as the disease may not have yet progressed to noticability. It's 6 years later now and he has seen what the disease has done to him, and what it is. Being on these prescriptions, visiting hospitals and not being able to live the life he knew prior to this unfortunate diagnosis can weigh heavily on a mind over time. He may be battling bouts of depression and needs your support now more than ever. Support groups and doctors may be needed during this time, but support at home goes a long way. Try to be understanding even though you may not see any physical reason for this, there is a lot more to a condition than what the medical books say. Best of luck to you both, these things affect the person and the people around them, I can understand your frustration.
talk to your husbands doctors. See if there is a support group for people with ms and their families. Good luck.
it's really tough on both of you. I have a friend (also about that age) who has MS and it's rather difficult to guess her mood, so we are always walking on eggs.
As for the medication, each person reacts differently to it.
maybe attending to self-help groups will help, and a therapist would also be a good pick.
Wish you luck and God bless you.
Exhaustion is the one symptom that everyone who has MS suffers to varying degrees. There is no drug therapy for MS that infers or implies that it will make a person normal. In fact Rebif is a mild form of chemo and intensifies exhaustion and also gives the patient flu-like symptoms. The efficacy of MS drugs (ability to help the patient) is about 50%. People who have MS ARE NOT IN GOOD HEALTH. Their own immune system is attacking their body instead of protecting it. I suggest that you go to the National MS Society website and do some reading or call one of their counselors and get some assistance. That is what they are there for. NMSS.org