Coping with a progressive and Chronic illness……

Its odd but I find I can cope with my MS, its other people who seem to struggle with it.  My idea really is to just live a normal a life as possible. I don’t want visitors to come and see me and pity me, or keep asking me “how do you feel”? or well you “Look good”!

It depresses the hell out of me. Also if I do say well i am really tired today the stock answer back is “oh yes” I get fatigue too, it comes with age, or my memory is crap you guessed it the same answer back yeh it comes with age, blah blah blah.

Do you eat well?  Try supplements, meditation, go gluten free and dairy free, watch your diet, oh and don’t forget EXERCISE.  we are BOMBARDED with ideas on how to make our journey with this illness easier or even grant us a miracle and cure us, just by buying a book that tells us so. I have bought the books and they all contradict each other. One says eat lagumes the other one says dont eat lagumes. Its never ending.

You should try this diet or that diet, everyone is an expert on how to cope with MS. What people seem to misunderstand is a simple concept.  There are FOUR types of MS.

Clinically Isolated Syndrome (CIS)

Relapsing-remitting MS (RRMS)

Secondary progressive MS (SPMS)

Primary progressive MS (PPMS)

Other, unusual types of MS have been described; these include Devic’s diseaseBalo concentric sclerosisSchilder’s diffuse sclerosis, and Marburg multiple sclerosis. There is debate on whether they are MS variants or different diseases.[63] Multiple sclerosis behaves differently in children, taking more time to reach the progressive stage.[5] Nevertheless, they still reach it at a lower average age than adults usually do

Each MS is dealt with differently. RRMS you can start disease modifying drugs, and have a chance of much less impact on your life if the drugs work for you and you can go into remission for weeks, months and years with very little symptoms.

With PPMS you get this at an older age as a rule. As we know as we get older things wear out  so sometimes you never know whether it is your MS or just your old joints giving you gip or your eyesight or your bladder.

There are no DRUGS for PPMS. No books to read on how to cope with it.  Most famous actors with MS who go around showing how well they are coping with their MS have in actual fact got RRMS.

The books written which are famous for making some of us feel like crap are:

Terry Wahls Protocol (written for RRMS).

Over coming MS. (Written by George Jeinek another sufferer of RRMS)

The Swank diet.

“Ashton Embry’s Best Bet Diet

OMG really all these people have their own ideas on how to cope with MS.  Its so confusing its enough to put anyone in a relapse trying to make sense of it all. Believe me i have read some of them, well skipped through.

I actually try and eat very well and i don’t over eat either.

My way of coping is this.

healthycoping_noheading

I think part of a healing process no matter what it is, is ACCEPTANCE. I often liken to having a diagnosis of a disease like MS is we have to go through the grieving process. 

  1. DENIAL
  2. ANGER
  3. BARGAINING
  4. DEPRESSION
  5. ACCEPTANCE

I honestly believe we have to accept our illness in order to help us deal with it and yes maybe in some way heal ourselves or help us cope with it better. If it means telling your auto immune to go and do one then so be it. You have accepted the fact that it is this which is controlling your life right now, and your not about to let it rule what you can do.

I suppose what I do is if i get a new symptom is i just accept it. I will say ah so that’s your game is it, today you are giving me an overacted bladder ok well i can deal with that. Not too much of a problem, and i will just pee when i need too and rest a bit more as I know sometimes i get it because i have over done it OR even worn warmer trousers I know silly but it is how i deal with it.

Or a new sensation will come along and i will accept it and say ok so thats your game today, you want to give me this that’s fine i can deal with that one, and i will just ignore it, not make a FUSS about it, and carry on doing things I enjoy like my garden hobby or taking my dog out.

I take only one 2mg diazepam at night for my MS. This is for muscle spasms perhaps which have occurred from poor posture.  It just helps me to settle down if i wake up.  During the day i take nothing. It doesn’t matter how much i am in pain, i accept that the pain is there and I move on.  What can I do about it? Its not REAL is it.  I say to myself I am not ILL I am NEUROLOGICALLY CHALLENGED.  I do listen to a lot of music which i find very calming.

15915109-illustration-showing-damaged-and-healthy-myelin-sheaths
top image is damaged. 

The myelin sheath is damaged which confuses the brain signals. These can be worsened through outside influences like heat for example.

When we are hot the spinal cord constricts, when we are cold it expands, so more signals can get through. So i avoid the heat as much as I can.

Inflammation can be stirred up by certain foods, so knowing which ones can do this its best to AVOID them. Which i do. For example gluten is a real trigger for me for more inflammation response like burning legs.  Like yesterday i just couldn’t resist some pasta and now my legs are really going for it, burning like mad but well it will settle down it always does.

STRESS is the worse thing for MS, so folks no stress please. I just cant deal with it, so everything in my life has to be pretty well organised.

Its LEARNING to live with what is going on and not to poke the bear. I know going out will make me fatigued, fatigue can be dangerous as I loose my balance more and more likely to fall so i do restrict how I go out.

I have accepted my MS its part of who i am. So i live with it i don’t fight against it. I have a decent enough life I suppose. I try my best to keep on my legs as i know to stop using them we loose them very quickly.  I am happy with what I have.

A lot of pain we have in MS in down to musculoskeletal pain, so its important to try as hard as we can to keep those muscles strong to support us.  I do have a scooter and I take my dog out everyday so she and I can have fresh air. It makes me good to feel the fresh air on my face. We use a wheelchair when i am shopping as to try and walk is just PUSHING THE BEAR to much. I have ACCEPTED that I cant do it so why push it.

Diet is defiantly a good way to start I think. I don’t think anyone with MS should smoke or drink to be honest as the smoking is bad enough but drinking alters the brain to some extent and its confused enough as it is and we are more prone to accidents or falls if our brain is so confused it doesn’t understand how to keep us safe.

So yes I do say “oh for gods sake go do one”! I cant be bothered with this rubbish (I use a stronger word here lol) right now. And after a while of switching it off in my mind i forget its there.

Like i said i take no drugs during the day. When the pain of wrong turn signals gets too bad I have a bit of therapy in the form of shopping lol. I have way too many things in my little flat lol. But it does work.

I also write a blog which helps me to concentrate on something else then what is going on with my body and I watch lots of things on amazon or netflix.

I know i have been told i have a progressive disease, i have to learn to live with it, no point in crying over it, there are worse things out there to cope with and people far worse then I am.  I think as humans we are challenged and its whether or not we ACCEPT that challenge or deny it that is the key.

All I need it my life is less stress, I have a loving family and friends, and when people do come and visit me, I just want to talk about NORMAL things, i dont want to be reminded constantly all the time, that i have a progressive disease, it depresses the hell out of me.

It all helps make this journey a lot easier to cope with if you just see me for who I am and if you really know me you will realise I am not about to let some disease invade my body and tell me what to do with my life, STRONGER MEN HAVE TRIED and not succeeded.

Something which is known just by capital letters is hardly ever going to be a challenge for me as i can change them. MS can stand for anything if you have imagination I call it  (Monster Sucker). It doesn’t have to stand for The End of your life, just the start of a different life with new challenges.

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I just wanted to share with you how I cope with my progressive disease everyone is different and has their own ideas but its my personal journey and so far it works for me.smiley

 

 

 

 

 

11 thoughts on “Coping with a progressive and Chronic illness……”

  1. Thank you so much for sharing how you have dealt with this not so fun illness. I was diagnosed with MS at a young age and it shook me to the core. But 18 years later, I am still here to share my story and help others as well. MS is a difficult thing to process and accept, but it can be done. I appreciate what you wrote and it was very well written. I do look forward to reading more of what you share. I hope if you have the time, you will check out my site. I do my best to share as much positivity as I can in this negative world, but I also share truth about how I deal with struggles. I hope you have a great weekend and you are feeling well!!! Take care!!

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    1. Hi hun it took 16 years to get diagnosed. Mine started with going blind in one eye on holiday. It scared the poop out of me. The doctor in UK wasnt even bothered about it as it had resolved itself and since then i have realised like ON can do that. I know after several tests I had ON and it was the last test which finally told me i had PPMS.

      I am still not convinced it is PPMS as i had so many odd things going on from 2000 even had to stop work for six months in 2004 when i was so ill no one knew why.

      I shall read you blog with interest. You seem positive and i think it is what we need around us.

      I went out yesterday really pushed myself and had a bad night, but at least I did it.

      Take care too and i hope your journey continues to go a little easy on you. Know one knows how bad it can be unless they have it. xxxxx

      Liked by 1 person

      1. My goodness I am SO sorry for commenting so late. Life gets so busy and I have been exhausted lately.
        It is wild because the vision thing is how I was diagnosed. I did get my vision back, but it was so terrifying then.
        So you disagree with their diagnosis of PPMS? What do you think this could be? I always say, we know our bodies much better than anyone else.
        I know it is hard, but please try to not push yourself too far. I am bad about it because I often do the same, but I am trying to not push too hard. I have been feeling terrible lately and in SO much pain.
        I do hope you will enjoy more of my posts, even though I can’t do them as much as I use to.
        I hope you are resting and feeling better. Please know that I am always here if you need to vent and will do my best to respond as quickly as I can!! xxx

        Liked by 1 person

      1. Hi Alyssa, i dont get it. I had relapses. after the 2000 in 2004 i was off work for six months, classic MS symptoms (now i know), uti, exhaustion, i could barely move but slowly i got my strength back and finally managed to go back to work. would that be PPMS? Its just a puzzle. before 2000 i had things going on was always ill taking time of work. with weird collapse. I just dont know anymore. My neuro told me i was classic PPMS so i suppose i have to believe him. I did have private MRI DONE in 2006 the old fashioned way with large films. It showed large area of high signal foci in the deep white matter of my brain which could have been from a demylinating disease but the radiologist decided to poo poo and it say it was down to my AGE. Now that finding was ignored.

        I suppose i dont have much faith in doctors lol. I was told i was TOO OLD to have RRMS.

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  2. Hello dear, I enjoyed your blog on MS. In high school at the age of seventeen, is when I first experienced MS. I was an athlete and danced a lot, but I started walking real stiff and tripping over my own feet constantly. At age 18, I was blind for two months. I did some reading and diagnosed myself with MS. A doctor said I was crazy and asked me to leave. I reported him.
    Throughout the years MS tried to stop me from enjoying life but I fought back hard. I worked for awhile, went to school, married, had a family, divorced and just kept living life. All while suffering from MS. My faith in God has kept me hopeful. My sense of humor kept me from worry too much about what I couldn’t control. I’ve had RRMS first. Now it’s SPMS.
    I also found that being active as you can helps. Be positive. Music is good pain management. Be careful with meds. Don’t get addicted to strong pain killers. Find alternatives. Craft is also good pain management but if you feel bad at the moment – take it easy, it’s Ok. Eat healthy and take good care of yourself. Remember, with or without MS, we could be doing a lot worse. Sure, no one is happy about MS but be grateful for life and the blessings that you have. God bless everyone!!

    Liked by 1 person

    1. Morning Peggy well it is in the UK. I knew in 2000 when i came home from holiday that i was going to get MS I felt it, after going blind twice. It was my first doctor who totally ignored these very very important symptoms and treated me like i was just ok nothing to worry about here just move on attitude he had. From 2000 to 2006 i had stuff chucked at me. I even told one of my teachers that i felt almost as if an evil genie was sat on my chest stabbing me in my arms and legs lol……

      Once i finally got the answer after another positive VEP test, I knew i had been coping with it on my own for at least 16 years. what was so sad, is my mother never knew for sure what it was as she died 2 weeks before my final diagnosis. I dont know how i got through that period in my life i loved her so much she was 93. She died unnecessarily and I was the one who dealt with the complaint. I dont know where my strength came from but i did it and we got an apology over her death. I totally forgot I had MS for a time, but once it was all settled it came crashing down until my husband passed away in 2017.

      I use music to soothe me. I dont do craft as i am not good at it, but my daughter paints as she has her own pain to deal with.

      I know having a diagnosis of MS is scary for many people but it doesnt have to be the end of a life, but the beginning of a new road, with different challenges. I have met so many lovely people since I got sick i would never have met them before. Long term friends who touch my heart always and we are joined together in this journey.

      Thank you for reading and taking the time to share your experiences. I want to help people. Reach out and say its ok to be strong, but equally it is ok to be frightened, but its not ok to just give up your life without a really good fight. xxxxxxx god bless. xxx

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  3. Hi everyone 👋 it’s a bit late in the day but we know how the morning is. I suppose I’m lucky today because I’ve actually got out of bed. I was diagnosed with PPMS 4 years ago and unfortunately it’s standing up to its name and making my life unbearable, when i saw the sun this morning again it brought a smile to my face and a sudden urge to get out in it for a while so I’ve made a brew and here we are in the garden thinking of England. I hope you lot out there are enjoying it as much as myself. If crazy chick is on line give me a shout and we can carry on with our conversation.

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      1. Morning, sorry that I’ve not been around but I’ve been really poorly and it’s been hard to just pick my phone up and reply or even just see what’s been going on. Feeling very frustrated at myself because there’s lots to do but my body doesn’t want to work with me so unfortunately I’m letting it do what it wants. Hows everyone today? Hope you are enjoying the sun and having a chill.

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