Socialising is a pain…….really

I was blessed with Primary Progressive Multiple Sclerosis.  Who would know that one day I would be diagnosed with it after so many years trying to work out why I felt so rotten all the time.  Bit of a shock to the system I can tell you, but well lots of people have things to contend with don’t they in life, and as we get older, bits start to fall off and we get older, and more tired.

Who would have thought that having MS would turn me from a happy fun loving person, who loved to talk and meet people and have lots of friends. I loved to entertain my family especially for Christmas and special occasions. Mike and I would often hold Bar B Q’s in the summer and he was actually a very accomplished cook with the charcoal. Life was good really.

Mike and I often went on holiday together and we would take his mother too. We went to USA, Greece, Brazil, Malta, corfu, crete, rhodes and other places.   I was full of energy and had a quick wit and mind and well actually quite a good sense of humour.   I had a great job, worked at least 60 hours a week, ran 11 learning centres and 54 tutors were in my care.

I have accepted my illness what else can I do really?  It is here and now i have learnt how to deal with this uninvited visitor.

I hate it so much as it has taken so much of ME away and it robbed me of better times with my Mike.

I am never really sure who is actually standing in the mirror it looks like me, but well it doesn’t feel like me. It feels like my body and brain is there but like the cliff edge lots of who I was has been eroded away and I am kind of left with this accumulation of cells, and blood, and fibre and body that only has the capacity to actually exist with half of what it had.   Like a glass half empty kind of feeling. Half empty

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Hands up how many of you reading this have a calendar or diary, and its filled with dates and places or things you are going to do?  I don’t have a diary or a calendar. I have a white board and if I am lucky to actually write on it a visitor is coming or I am booked to go and visit someone, do something really cool, if I have to change it at short notice I can simply WIPE IT OFF, like well my MS will have WIPED me out that day. I never know where this disease is going to take me in anyone particular day.

I can have a really good nights sleep and a rotten day, and vice versa.

Friends or family will invite me for a party, or gathering and I can write it down on my white board but I have no idea if well I will be well enough to actually get there.

Fatigue is my enemy and pain. Now let’s get this straight ok, fatigue in MS is not just feeling a tad tired and a  quick sit-down on the sofa will resolve it. No way for people with MS its like being hit by the worse flu ever, then have to run a marathon.   OK think about it, if you have ever had flu, and your body is just sunk into your mattress and you cant get up, that is MS fatigue.  MS Fatigue can just hit you in seconds just doing something silly like talking to someone on the phone.   energy-conservation-in-ms-during-the-holidays-julie-huerbin-otrl-mscs-3-638

I am usually not too bad when I wake up and I have learnt to work around my fatigue. I do everything first thing but as the day progresses so does my fatigue a bit like a battery winding down.  By 2pm I am wiped out like a hard drive nothing left in it of any use, and just resting. Just talking is exhausting and it can make me so tired I sit there yawning and gasping for air which must look pretty rude, but believe me I don’t do it on purpose.

Just going out is a huge effort for someone with PPMS. It takes a huge effort yes it is good to get out, but you know the consequences are going to be even worse fatigue when you get home, and pain.

Yes pain. There are some people even doctors sadly who think there is no pain in MS wrong. Yes some people when they first start their journey may not be bothered with too much Neuropathic pain it depends largely on where their lesions are located.

Mine are in my spine.  I suffer Neuropathic pain 247, it never stops or gives me a break ever.  I cope with it during the day because I am doing things, like writing this to distract myself.  Now going out will make it worse because my brain has to work harder to keep me safe which makes me more fatigued and then allows the pain to run riot.

Pain burning, fizzing, tingling, buzzing, prickly, spasms and cramp, muscle stiffness,  oh and one of the worse the ITCH.  I dont mean a little itch, my hand and fingers will feel like I have had the worse CHILBLAINS ever and you cannot get relief.  Lol the times I have had to check my scalp to make sure I didn’t have nits the itchy patch on your leg you scratch raw it is relentless.   It can change in seconds. Its like a roulette wheel where will the ball land next…..

Just knowing if you go out it can give you so much pain you want to scream and so much fatigue you want to just stay on your recliner why on earth would you want to go out to deal with that, or have people come to see you and leave you like that?

Well you have to really try hard to make the effort but please whoever reads this and doesn’t suffer from an auto immune or chronic illness or MS, be patient with us, we don’t want to be boring or upset you, we are sick sadly and its hard really hard to be this way when you have led a really exciting and full life.

I had my family over for Easter lunch and I made a huge effort to put on food, yes it was all frozen and zapped in microwave but I really enjoyed myself, and later I had other members of my immediate family turn up and my Easter day was lovely, but now today even writing this I am so fatigued and in pain, I just want to curl up and do nothing, but I am determined to try and have a glass half full day for a change but at the moment my battery is winding down very fast, so I will close now, hope you have a little more insight into my journey.

Have a good day and thanks for reading.

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Little me 

 

6 thoughts on “Socialising is a pain…….really”

  1. Thank you for making the effort to write this . I can totally relate to what you have described. As I am laying down try to recharge my energy, I too feel the planning and strategizing one has to put into having some “fun” is too tiring. Simpler to just stay home and quietly do the essentials of the day.

    Liked by 1 person

    1. Hi Rubina sadly a lot of people who dont have MS or similar disease just don’t get how hard it is for us. I have done very little today and am exhausted as I am still trying to get over Easter Sunday. Sometimes the effort is just too much for us, but then I do enjoy an achievement even when it wipes me out. I just hope I can still enjoy some achievements on my journey, I feel once i stop that then I know I will be at the end. xxxxxx Have a good rest and recharge. xx

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  2. i am fairly advanced with ppms and typing is hard. it is hard to lift that 1 finger. i need to sell my house because i can’t climb stair or even stand. but if i move i will not be able to make new friends. i mostly sit in the recliner. if i live long enough i will probably have locked-in syndrome. nevertheless, my daily attitude is not depressive. i am a fine artist and now do digital art. i also started singing lessons as therapy to strengthen my speaking voice, my ability to swallow and breath. i’ve never been able to sing and now i am learning opera. i.e. i can’t do those things that have always given me pleasure but i have treated that as a challenge. this paragraph has cost energy but one last thing: studies have shown that the majority of those who survived concentration camps had unusually good senses of humor. so laugh at little things, make faces at yourself in the mirror and avoid the news.

    Liked by 1 person

    1. Hi Nancy what a truly inspiring message. You are are so right, Never be afraid to try new things. I never used to write I don’t consider myself a writer as never was good at the English Language, i used to enjoy more practical things like cooking, making wine and gardening. Sadly those days are gone now, just potting 3 plant pots makes me exhausted.

      When I lost my husband my counsellor said to me why don’t you write down your journey you have done so much in your life and if you reach one person it will be worth it.

      I am so enjoying writing but like you it is a challenge. I get exhausted so I tend to type on Word, save and when I am happy I publish. We always seem to find ways to get around things.

      For example there is an onscreen Keyboard installed in most computers and its found in accessories/Ease of Access. I am using it now to type this. You can just use your mouse rather then type, and its so much easier for disabled people with bad hands.

      I am like you now I sleep upstairs and i should get a stair lift but for now the stairs keep me active and my OT has had 2 lots of handrails both sides so I may pull myself up. I need to move too but like you its challenging and I will have to make new friends. This house is full of my memories. If I have too i will sleep downstairs when the time comes.

      Oh I am like you too Nancy I love music, but no way would I sing the dogs in the neighbourhood would start to howl lol. I have a terrible voice, but my music is on all the time.

      I am a good listener too and help a lot of people on support groups.

      I used to laugh all the time when my husband was alive perhaps when I can get passed his death my life will settle back down a bit more, but for now there isn’t much to laugh at.

      My husband was obsessed with the news honestly, now I cant bear to hear it, and believe it or not our television downstairs has never been on since he died, and I don’t miss it at all, as my life is my writing, supporting, listening to music, taking my Lucy dog out for a walk and enjoying my tiny bantams I still have. Just sitting in the garden listening to the wild birds I love it. My care worker keeps me sane and overall to be honest my life is better then a lot of people without MS.

      Life is challenging anyway and to survive we just have to find a way to deal with it. I wish you well, I am honoured to have met you. xxx

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  3. I recent found a MRI Gadolinium Toxicity group on Yahoo.com because although I was diagnosed with multiple sclerosis in 1998, I have suffered greatly with deep bone pain in my arms and legs and for the life of me, I couldn’t find bone pain anywhere on the internet as a symptom of MS. Then one day, I typed in “bone pain” as I had done several times throughout the years, but this time it guided me to a website called http://www.gadoliniumtoxicity.com. A Lighthouse Project to shed light on the effects of retained Gadolinium from Gadolinium Based Contrast Agents (GBCAs) used for contrast-enhanced MRI’s.

    I have had ten plus MRI’s with a GBCA and each time I’ve had one, new signs and symptoms would pop up out of nowhere, my deep bone pain being the most unrelenting!

    I believe that Gadolinium is the culprit that has been deposited into my brain and bones and organs causing so much havoc in my body. I and other members of this Yahoo MRI Gadolinium Toxicity group believe that we have all been poisoned with this heavy metal, even though the FDA says it’s safe for people without kidney disorders or renal failure. Of course, as you well know, as with MS in the early years, the FDA has not performed many studies to confirm or deny the dangers!

    With millions upon millions of MS patients getting MRI’s with a GBCA’s, they are the most susceptible to the GBCA’s being retained in their brains and bones and organs. The worst part is most MS patients don’t just get one or two MRI’s with a GBCA, they get several throughout the years! I will cut and paste information below about a story I found on the MedInsight.org website regarding Gadolinium.

    On the MedInsight.org website in April 2016, they had an article about Gadolinium.

    The title was, “The Safety of MRI Contrast Agents Questioned.”

    The article states, “Gadolinium-based contrast agents, which are used in about 30% of all magnetic resonance imaging (MRI) scans, MAY NOT BE SAFE. The metal MAY settle in the brains, bones and other organs.”

    “This literature review analyzed studies detailing how Gadolinium, a toxic metal used in over 30 MILLION MRI scans each year, STAYS IN THE BODY.”

    Just think about this for one minute. Over 30 million MRI scans performed EVERY SINGLE YEAR use Gadolinium!!! And this is only 30% of all MRI scans performed! Read that again!

    That is millions and millions and millions of unsuspecting patients being given the contrast “die” every…single…year!!!

    I appreciate your blog and I hope you and others will check out the websites I mentioned above. I don’t understand why no one in the MS community isn’t alerting all MS patients to this toxic heavy metal that is being injected into unsuspecting MS patients. Please check it out and write a column alerting your readers to the hazards of GBCA’s. Thank you 🙂

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    1. I had to have an enhanced MRI and I was told it could affect my kidneys so one is not allowed to have one if they have kidney issues. I did read up about the effects of this stuff and there was a group I found in the states with a solicitor who was taken the manufacturers or whatever of this stuff to court because so many people are sick with the effects of it.

      I also found an article written by someone who said as a diagnostic tool for MS it was pretty useless, as you could do an MRI everyday and getting a different image then on the 7th day you might pick up something depending on the slice you take when you are doing the filming.

      My experience showed a large bright orb/shape lesion and the radiologist put it down to an ARC on the film. My neuro however, believed it was a lesion. So what was the point to me having it in the first place.

      I hope you find some peace with your experience, but I have had deep bone pain with my MS before the MRI which was enhanced and I have heard of others who have had this too. I know of several people with PPMS who suffer bone pain at times.

      Enhanced dye MRI is not only for MS its for many other diseases too.

      Sadly its like anything some people will never have issues and other people will if they are sensitive to it.

      I am sure if it was dangerous it would not be in the interests of say our NHS in the UK to use it if they knew lots of people would become sick with it, as they are stretched enough as it is. BUT I was warned about possible affects BEFORE I went for mine.

      The scientists are realising this stuff might not be so good and this is just one article from 2016, so the dangers of it are being noticed.

      https://www.sciencedaily.com/releases/2016/04/160406124931.htm

      Good luck and thank you for reading my blog, we are MS sisters and going through a vast journey together many of us. xxxxxx

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