It is cold

[RoyceNewton]

It is cold but sunny, okay maybe not cold but cool, my toes are cold. I should walk downstairs and put some slippers on my feet. Nah, probably not, just to lazy to walk downstairs. Such is the life of a twenty year retired veteran of Relapsing Remitting ms (RRms) Life is good, is it not? Let’s be honest, I had to wake at 6am to take my first daily Tecfidera dose, and I really should do some more exercise, Walking might be a good idea. Also I should at some stage think of breakfast. I am really unlikely to think to much about my RRms. Not true, World ms day is this week and I might call the state ms Society and see if anything is happening in this town. I bet not as the local delegate (People with ms) rep has shingles and is in hospital. So I will just call and say G’Day out of politeness.

Do “YOU” see, understand, life goes on as scared as “YOU” are at first, life goes on. There is no need for it to be bad, it just “IS” my friend. “YOU” decide if it is a battle, a fight that “YOU” must confront everyday, or is it just something that is happening to “YOU”? It is not totally out of your control. There are things that can be done to slow down and minimise it’s impact on your life. Start with your Disease Modifying Therapy(DMT), exercise, eat better, sleep. Wear your protective underwear. “YOU” are likely a female so this is not to much of a stretch, if “YOU” are male, get over it, far better to be protected than soiling yourself at an inconvenient time. Learn where the toilet (bathroom) is whoever “YOU” go. Good to know in emergencies. Do your research and learn about your very own RRms. Learn about your DMT options. Learn what the side effects mean. Flu-like symptoms are sort of vague and they may not effect that many people. Learn what the percentages mean. If “YOU” do not know or understand keep asking until “YOU” DO. It is no good if in twenty years time. to wish I had of, if only I had. ASK.

This today is a vary doable disease. There is mostly no reason why “YOU” can not and “DO” not have a full and satisfying life. Perhaps being a steel worker on high construction towers is out of the question, and I am sure “YOU” do not want to see me in the cockpit of your next international flight, but there can be so many other things available to “YOU” Just take a few moments, (days months years) to find something that “YOU” may like to do and accept that “YOU” may change several times. Do not be like me, at first despairing as to what I would do with my long life, remember I was 29 when I was diagnosed (Dx’d) I would never have thought that was happened in my life would happen and that I could survive it. I still really dislike needles and magnetic Resonance imaging (MRI) machines are not by favourite. I have had fifteen or so now, but valium really helps.

So, I recommend relaxing. Accept that everything that “YOU” dreamed of is going to be different. It does not have to be different bad, but it will be a lot different than “YOU” expected, but this is your very own RRms life enjoy it live it, with your shoulders back. Eyes straight ahead and a smile on your face, and a fire burning in your belly. Let that fire burn bright and guide “YOU” along your ms life journey and warm “YOU” when “YOU” are scared.

Royce

smile and be contented, change what you can, accept what you can not

[Jesmcd2 CommunityAmbassador]

Ah! A key word for us all RoyceNewton acceptness. I found once I accepted that this monster wasn't going to go away, it seemed easier to deal with. If that makes any sense.

Good luck on the tecfidera!🤗💕

J🌠🦈

[RoyceNewton in reply to Jesmcd2]

perfect sense something we all must learn to do, accept because it is and there is no way to make it go away

[Bodega1939]

Royce, I agree with you in general but not in the particulars. Each person's capacity to cope with the changes associated with RRMS depends on that person's own personality and resilience and the area in the brain being demyelinated. It is also highly dependent on the daily support available to them. There is literally nothing we can do now, at this time, to alter the areas being demyelinated. There is little one can really do to alter innate resilience but there is a huge amount we can do to cope by changing living patterns, adopting new ways of working around the problem induced by the demyelination and thinking about new ways of acceptance.

I was quite happy with my life for years and years (50 years actually) and I wasn't severely afflicted. I did not need to use a wheel chair, etc. However, the SPMS (secondary progressive MS) is a different story at least for me and maybe not for many others. They will have their own issues with it. I accept mine.

I am a Buddhist and no blame is assigned to anyone or anything about this whole MS affair. It is as it is. Everyone develops their own acceptance as they can in their own time, or they don't or they do partially or they can't due to disability. I am no long as sanguine as I was in the past about my ability.

I hope you all have a great day. If you can't walk or have great difficulty, please try Ampyra but check side effects and interactions with other drugs first.

Nemaste.

[RoyceNewton in reply to Bodega1939]

Buddhist, yes now I understand you a tiny bit better

[carolek572 CommunityAmbassador]

Always good advice in your posts! We all must adapt to our unique 'ms' journey. We are all different.

Keep Smiling,

Carole

[RoyceNewton in reply to carolek572]

we certainly are and that is what makes it such fun. Yes I am being sarcastic

[carolek572 CommunityAmbassador in reply to RoyceNewton]

Ha!