Living with MS

[peggy857]

Hi, I was diagnosed with MS 3 years ago. Living in Texas, summers are difficult due to the heat, so my activities are less. Recently, I joined a club and have access to the workout and the pool and its varied offerings. Makes me a happy camper here. I try to do pool activities several times per week.

I'm curious if anyone else also suffers from Trigeminal neuralgia (TN). It's no fun to go through this alone. You might want to look it up; it can be devastating. Hard enough to live with this and worse when there is no one to share with.

Check my Facebook page under Peggy Thomas.

[Allen5280]

I have been going through mine all alone and it's hard. I also suffer from TN from time to time. Having a tooth ache is no fun having all of them feel like they are in need of a roof canal at the same time is a nightmare! I am just coming back out of a hermit phase and have not listed anything here recently. I live in texhoma (southern Oklahoma) Duncan to be specific. I would have looked up your Facebook but I don't do the whole social media thing except for on here. The things people say about others breaks my heart at times. To try and sort through some of the stuff just is overwhelming for me. I got away from that years ago. That is great news that you found a outlet that makes you happy. I needed to sell my house last year and bought a 5th wheel travel trailer and live in an RV park so I am a happy camper too... moat of the time anyway! 😂

God bless

Allen

[peggy857 in reply to Allen5280]

Allen, Our plans are to sell our house soon and by an RV - bus or 5th wheeler. Would love to know your experiences and opinion of living this way (thinking of travelling and visiting state parks)

[Allen5280 in reply to peggy857]

Well it takes some getting used to that's for sure. They can be very frustrating epically when things start breaking. Repairs can be somewhat pricy and the amount of storage is quite limited. Winters can be drafty and summer can be quite warm without preparations to make things more tolerable. I have a keyatone everest and with MS living here in it is my my Mt. Everest. I have managed for just over a year and it has been challenging. On the positive side. No yard maintenance and quiet for the most part. I have only moved it once. I though at the time I would be living around here and there but just have not had the strength or energy to do so. Then again for the most part I am doing it all on my own. There is regular maintenance like dumping the holding tanks and such that does help me keep pushing on to keep up. I however do have mine up for sale along with my diesel truck to pull it with. I am to the point where I am looking for an alternative. However government housing is not what I am looking forward to whatsoever so I have been dragging my feet on it. It is quiet and peaceful for the most part where I am and am not ready to surrender that. However with the financial challenges that come with being on disability and medicare and Medicade (i could uave never of even dreamt I would be in this position financially) it is a challenge that's for sure. I am getting by though so that's a blessing in itself.

[jimeka in reply to Allen5280]

Allen5280 i wondered where you were hiding. How are you doing after the new treatment, any improvement? I hope and pray that you have. Take good care Allen, and remember we are all here for you. Blessings Jimeka 🦋 🌈 🤗 🍫

[Allen5280 in reply to jimeka]

jimeka , Ocrevus is the first dmt I have been able to tolerate and yes things are a bit better. Neuropathy, trigeminal neuralgia, Spaticity and things just in general are not quite as bad as they were before. That being said the stress on my body period isn't nearly as significant. When i was on tifecdera, gelinia, and copaxone it was horrible. However I have also made huge changes in my diet as well. Eating lots less meats in general. Had a couple pieces of chicken last night and that was the first in almost a week. Trying to keep to as many whole foods as possible. Nuts, vegitables, fresh fruits and berries as well. It was a surprise to me how quickly I adapted to the change. Hope and pray all is well.

Allen