Mind

The Hidden Symptoms of MS

It has been a while since I’ve blogged; my recent time has been taken up with work, a European city break, birthday planning and, let’s face it, a great deal of rest and sleep (needed after those other things!)

I really want to blog more regularly and consistently, but to be honest I am finding it harder and harder at the moment.  These days, even small amounts of activity (i.e. baking a cake for my husband’s birthday or going out for a meal) exhausts me; my spoons have reduced in number; either that or the simplest of activities use up more spoons than they used to.  Either way, I’m struggling.  Just when I think that I can’t have any more MS problems, a new one crops up.  My running total so far includes all of the following, with the exception of any problems with my bladder and bowel:

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Added to this list for me is Clonus – involuntary, rhythmic muscle contractions in my legs.

Some of my symptoms come and go.  For example, my word-finding problems arise when I am particularly stressed or fatigued, but others are there all the time – my fatigue, my dragging left leg, my weak left hand that means that I am unable to easily complete the simplest of tasks, such as cooking or typing.

This week, I have had three falls in three days and I am scared; how many more falls am I going to have before I break something?  Is it time to be permanently in a wheelchair?   Maybe this should be another ‘common’ MS symptom… being scared.  I would harbour a guess that, as time goes on, 100% of all MSers suffer from this symptom.  Scared of what is happening to themselves, scared of the effect that it has on their relationships, scared of the future, scared that their children will also get MS… just plain scared.  I am tired of feeling scared.  I wish that I could go back to the time that I wasn’t scared (in denial?)… those carefree days when I had no MS symptoms, despite a long-standing diagnosis.  How silly of me to think that I would be able to live my life free of the MS I was diagnosed with when I was 15 years old.  How stupid of me to believe that having ‘benign’ MS for 20 years meant that it would stay unseen, unheard, invisible in its truest sense.  Why didn’t I read up on how to reduce my chances of having future problems (for example by following OMS, which has been proved to have a positive impact on the long term outcomes of MS).

headinhands

Being scared

Feeling regretful; maybe I could have reduced my chances of suffering this much

Grief; for the person that once was

Feeling hopeless; nothing can be done

So often, the medical symptoms are talked about; this is certainly the case when I see my neurologist and GP.  But what about all the ‘hidden’ symptoms, the emotional symptoms that accompany chronic illnesses and/or a failing body?  Having a chronic illness is like a bereavement; as well as the above, you may go through some or all of the following symptoms in varying degrees: denial, anger, bargaining, depression and acceptance (see this well known model of grief).  I know that I certainly flow in and out of all the stages, my feelings vary day by day.

I am committed to the OMS lifestyle, though I have wobbled; at times it seems like I have left it too late to make a difference.  But I am also not fully near acceptance; and I guess this in some way encourages me to continue with OMS.

My husband said something to me the other day:

“You’re a very determined lady…some may say stubborn”

This was whilst I was dragging my heavy legs around Bruges, refusing the use of a wheelchair as it would have meant that some sights were not accessible to me.  But if being stubborn means that I continue trying to help myself, despite feeling worse and worse, then I am going to stick with it, for the time being at least.  I do need to address my feelings and emotions a bit more. I spend time stretching out my aching limbs, but my mental health sometimes gets neglected; perhaps it’s time to refocus on the meditation and maybe have a discussion with my GP about other potential things to help.  I recently chatted to a MSer who lives in Amsterdam via Twitter (find me @TrippingTreacle), who has regular and unlimited talking therapy as part of her treatment – along with acupuncture, physio and seeing a chiropractor – and this is the standard level of care through a small insurance payment!  She raved about it and said that she felt ‘really well’, despite being at the same level of disability as me.  Maybe all people living with chronic illness need to be given the option to treat their symptoms, mental and physical, in a holistic manner.  If it works in other countries, why not here?

What things have you tried to help your ‘hidden’ emotional symptoms?

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23 thoughts on “The Hidden Symptoms of MS

  1. Gosh, so sorry things are so tough for you. Even though I’m only months in, I can really relate to the fear. Everything is so friggin’ unknown. It’s so hard to stay positive sometimes. And it really is bereaving, losing your former self in such a sudden way that you can’t even believe yourself, let alone expect others to understand.

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    1. Thank you so much for your comment. It had been something that has been building up within me for some time. I do know that blogging helps me to ‘get it all out’. I don’t think it matters whether you are months or years into your diagnosis – dealing with the changes MS brings leads to huge emotions. Xx

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  2. I’m sure having this blog will help you Jenny and I’m sure it will be helping others who have MS or other chronic illnesses. I think many Drs focus on physical effects of chronic illness way more than the effects on mental health and it’s a huge shame. I’m sure meditation will help you and some sort of talking therapy has always helped me in the past. I’ve suffered from depression since my teens and anxiety since before then. I always find it’s good to talk to someone away from the family as if you’re anything like me I find it hard to say how I’m really feeling. Coming to terms and accepting a long term illness is huge. It’s taken me 10 years to accept being ill and some days that wavers. Talking with people can help a lot. X
    I find people with MS and other chronic illnesses are the most determined people I know! I’m pretty sure they always have been but since being ill they’ve had to be even more determined to cope with all the symptoms. I always find they’re very caring and often think of others before themselves.
    Make sure you have time for you and do something you enjoy every day. If you fancy meeting up for a chat let me know. Take care, Sarah x

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  3. Hi Jen
    I am also one very determined lady like you. In my case i was 2 whole years literally draging myself with crutches and a walker not wanting to contemplate wheelchair or scooter. Not going anywhere really unless by car and few steps walking involved, with the fear of going downhill the day i stop dragging myself . Until one day i woke up and i really had enough ( i gave in). I bought myself a scooter, a small one, and then i realised how stupid and silly i had been for the last 2 years! I can go now everywhere with the kids, to the park, to the shops, into town without worring if I would make it, if my legs would freeze, if my body would stop from walking, if i would fall, so much easier now, i am so much happier now, i have had the scooter since June and it has been a life changing. And with regard to my ms it did not get so much worse, i still use the walker and drag myself inside the house which is hard work and i suppose it keeps me fit. I sometimes wish i had wheelchair cause i would be able to make things at home much faster without getting so exhausted . Anyway final thing….had i have a second chance i would get a scooter earlier!! For those who are indecisive….. get it!!!!

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  4. I really enjoyed reading your blog. I am so sorry you are so tired and u run out of energy faster. This is something I can relate too. And making that step to a scooter is a big one. You could always get an opinion from your doctor if you should get one. Plus getting a scooter doesn’t mean you have to use the scooter all the time.

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    1. Thank you so much your comment! I actually do have a scooter that I use if needed at home, it is difficult taking it away with me abroad though. I need more money to be able to buy a mini travel one! It has really helped me keep going with everyday tasks such as taking my kids to school, so it has been great 😊

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  5. I feel you, I get it. I certainly hope you get some of your energy back. In the meantime do what you can. Breakdown tasks in stages. I cut needed food items hours before I cook. Sending fairy energy dust your way.

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  6. I can really relate to Sarah’s comments. A friend of mine and I get together and talk long-distance at least once a week. We have done an unofficial survey, and feel that a type a personality seems to be highly prevalent in those of us with MS.
    Fear is really something that is very pervasive. For me, it was to fall back on my strong faith in God to allow me to move through the stages of grief. Although certain circumstances definitely caused me to be fearful. Large crowds, stairs with no railings, walking longer than one or two blocks, fatigue, being a burden to others and just the unknown! God’s perfect love drives out fear! Some days I have to remember that minute by minute!

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  7. I know I have read this post before but Danny couldn’t have reblogged it at a better time. I haven’t been writing much or at all on my blog. I just can’t seem to focus right now with all of the above symptoms. Finding words has been a real struggle lately. Or saying the wrong word all together. Even though I know what word I want to say. Usually it isn’t a problem when I write but that hasn’t been the case lately.
    Scared should definitely be a symptom added to the list. Most of the time I don’t let it get the best of me but there are times I am scared for what the future has in store.

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    1. I definitely feel the same Shannon. Although I am away at the moment, so am having a couple of weeks off blogging, I have been struggling with symptoms more and more. I hope that it is just a ‘blip’ for us both. Healing thoughts going your way x

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