If you have the Auto Immune/Chronic Disease Multiple Sclerosis, and you have people to listen and talk to and support you, then you are VERY blessed indeed. I don’t have anyone that wants to talk, listen, help. My lovely tiny family do their best, but like many parents with MS we try not to be a burden.
It’s weird because I spent the whole of my adult life working with people with special needs, primarily children in special needs education, supporting them, supporting their network. Now I have my own invisible special needs and no one wants to know. I will come through this alone & rather than make me bitter I am determined it WILL in time make me an even more compassionate person, and help to ease any suffering in others in any small way I can.
Old oak trees don’t grow strong from sheltering, they become strong by being blown, and battered by the harshest of storms. Also pearls become beautiful by being tossed against the sands in strong seas, not my hiding under a rock in still waters. Take comfort that this nightmare road we are walking will lead us somewhere beautiful and lovely one day.
Nobody can say it’s easy because it isn’t. For any other folk with MS who are also feeling very alone in this scary unpredictable world of living with MS, I have here a collection of 574 short videos from the MS Society all in one playlist. I hope it helps somebody out there.
The best advice I have is to try and always be positive (I know this is hard) try & focus on what you can do, not what you can’t do. Try & find the best way for you to manage the pain. You will have Chronic Fatigue almost all the time & this is often the most disabling symptom, try and pace yourself throughout the day. Some days we are not capable of doing anything and doing nothing is completely exhausting (Only fellow sufferers will understand this)
I know many of you will understand this part, as I’ve read it on so many MS blogs. Being completely misunderstood by people you are close to. Many of us have seen people disappear out of our lives because THEY CHOOSE not to understand. This hurts so much, I can’t stress how hurtful this is, it is heartbreaking. We never asked to have this damn awful struggle. I now choose to live a very solitary life, I have just lost another special friend who went mad when I sent 3 MS videos to them to try & help them understand. I wont be doing that again, they chose to walk away.
Mine Isn’t an MS blog because I choose to blog about lots of subjects, songs, music, quotes videos etc. I would go completely around the twist if I thought of nothing but my MS, Fibromyalgia & the other illnesses I have.
Take great care, stay strong, God bless all xxx
PS Take time everyday to thank God for all your blessings. Seek out beautiful things on the darkest of days, no matter how small. Cry if you need to, sleep as much as you need to, it’s natures great healer x