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My first HuffPost blog

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Here’s a link to my first HuffPost blog!

https://www.huffingtonpost.co.uk/entry/unpredictable-me-life-with-multiple-sclerosis_uk_5ac7dbf6e4b01e0b61b762a6?utm_hp_ref=uk-lifestyle

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Feeling the cold

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Sometimes I feel a bit like Goldilocks when it comes to finding the right temperature. I easily get too hot and I easily get too cold, in fact it can be rather tricky getting it just right!

It is well documented that heat can make MS symptoms worse. Usually only temporarily, but worse all the same. In fact in times gone by, before MRI scans and the like, the test for MS was to put the patient in a hot bath and see if the symptoms got worse. If they did you had MS and if not you’d didn’t. A bit like how they ‘identified’ witches! Except without the risk of drowning as hopefully they pulled people out if it made their symptoms too bad!

But a lesser known fact is the effect of the cold on MS symptoms. For some MSers that can be a real problem too. As the autumn starts to change into full on winter this is becoming rather difficult. I live in fear of snow and ice. It’s hard enough to walk with MS and a stick on level, dry ground, but to negotiate icy pavements or walk in the snow is a whole new level of challenge! And just generally trying to keep warm in winter is tricky. It’s ok if I’m at home with access to jumpers, thick socks and the central heating thermostat, but dressing to keep warm outside…especially watching football (either my son’s team or the mighty York City) is something I haven’t quite mastered yet. I’ve experimented with different types of thermals, socks, layers, gloves and hats, but to no avail. I’m seriously contemplating some heated gloves and I’ve seen a fabulous jacket with a rechargeable battery pack that powers heat in different sections…it’s a bit pricey though!

When I get cold it’s not just the usual unpleasant feeling of being cold, it actually makes my symptoms worse. My legs stiffen up, the tremors start, the pain gets worse and the fatigue hits me and because my internal thermostat is faulty due to the MS it takes a long time to get warm again. I usually dive under the duvet, fully clothed with a hot water bottle and wait for the thaw to set in…

I have recently found some hand and feet warmers (called Hothands) that are activated by the air once opened and last up to 10 hours. I tried them last weekend at a very cold football match and they helped a lot. I’ve just found that M&S do two different thicknesses of thermals too so I’ve ordered a thicker top to try. I’ve also bought some new thermal socks that have a Tog rating! Like duvets! Now surely they will do the trick!

So, I will continue to hunt for things to keep me warm, pray for another mild winter and look forward to warmer, but not too warm, summer days.

World Mental Health Day

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To mark World Mental Health Day here is my blog about anxiety that I wrote earlier this year.

Mental health is complicated. Like physical health everyone is different. There have been many campaigns about healthy eating, taking regular exercise, stopping smoking all in order to improve our physical health. So it’s good to see that there are starting to be campaigns about mental health too. However, there does still seem to be a stigma surrounding mental health issues. Of all the things I’ve shared in my blogs, it is this one that I have approached with the most trepidation, but as it is estimated that 1 in 4 of us will experience a mental health difficulty at some point, I’m hoping it will turn out my fears were unfounded.

I have struggled with anxiety since I was in my teens. Back then I didn’t realise it was anxiety, but that’s what it was. Going into my 20’s it didn’t improve. In fact it got worse as I had a whole load of things to be anxious about! New jobs. New city. New husband. New house. New MS diagnosis… All perfectly ‘valid’ reasons to be anxious. However, the problem with anxiety is that the body’s reaction to a situation is not proportionate to the ‘threat’ that is perceived by the mind. So for example, to have a pounding heart, dry mouth, feeling like you’re going to pass out is a completely acceptable reaction to meeting a tiger in the street or a burglar in your kitchen. However, to have the same physical response to leaving the house or going out for a meal? Not so much.
The mind is a powerful thing and often worries and fears can escalate without being conscious that it is happening. If the underlying level of anxiety is high then the ‘fight or flight’ response kicks in with a huge surge of adrenaline in the body causing a very physical reaction. It can be hugely debilitating and very frightening. The pounding heart, feeling faint, struggling for breath, cold sweats, feeling sick all come out of nowhere and it’s particularly scary when it happens at night and wakes you from sleep. It’s often not even conscious, but the physical reaction of being faced with a rampaging lion has kicked in nonetheless!
The triggers can vary enormously and can be obvious or subtle. It can be a reaction to a specific situation or a more generalised state of anxiety.
The difficulty with having a chronic condition like MS is the unpredictability of it, which if you are already prone to anxiety is not a winning combination. So every time a new symptom appears or a previous symptom returns it’s easy to fear the worst! Is this the beginning of a relapse? Am I getting worse? Am I going to be able to manage what I need to do? Or actually. with my rational head on, is it a symptom that will eventually fade or I will learn to cope with or did I actually do too much yesterday and not get much sleep last night? It can go either way, but as stress can make MS worse it’s easy to get caught in a downward spiral of negative, anxious thoughts.

So what to do? Well I’m not a huge fan of medication, so decided not to go down that route, but was offered the chance to go and see a neuropsychologist by the MS nurse. You see the other complication with MS is that as it’s a neurogical condition it doesn’t just affect how the body works, but it can also affect how the mind works too. So whether my anxiety was caused by the MS or not, a psychologist may be able to help. I was reluctant at first as I’d had previous experiences of counselling and CBT which hadn’t been very successful, but decided to give it a go. I had nothing to lose. So a couple of years ago I started to see Dr M. She was a remarkably young (or is that just a sign of me getting old!) but incredibly competent and compassionate psychologist who listened to me and suggested things that might help. So what did I learn?
Firstly, to give myself a break! To try not to be the ‘people-pleaser’ I naturally want to be and to learn to say no. That doesn’t mean I lose my compassion or care any less, but to choose more carefully what I agree to do or volunteer for. To have permission to not try and do everything that everyone asks of me (or that I perceive they expect of me).
Secondly, to have contingency plans. To have a group of friends who I know I can ask if I need help if I’m not up to doing something. Who can offer lifts or get shopping or post me a letter. It’s much easier not to worry if you have a Plan B!

Thirdly, mindfulness. Now I’ve always been a bit sceptical of this kind of thing, but the psychologist recommended a book called ‘Mindfulness, a practical guide to finding peace in a frantic world’ by Mark Williams and Danny Penman. It’s an 8 week course in book form that comes with a CD of meditations/excercises. The idea is you read a chapter a week and practice the exercises daily. I remained sceptical. For the first 2 weeks I read the chapters and did the excercises and I felt ridiculous! I found the man’s voice on the audio highly irritating and I found my mind wandered…a lot! The book did say to expect this and I went back to the psychologist after 2 weeks and declared I felt no different. She encouraged me to stick with it…and gradually over the next fortnight I did start to feel different. The meditations were not so difficult and the man was slightly less irritating. I began to notice that my underlying anxiety was a bit less and the intense panicky feelings were less frequent. I stuck with it and the benefits continued to be apparent. My general anxiety continued to lessen and my mood improved. I felt more in control.
The problem with mindfulness, like many other treatments or therapies, is that you have to keep doing it (a bit like needing to finish a course of antibiotics even though the earache has gone) and I’ve not been so good at that!

So, am I fixed? Absolutely not. Do I have some tools to help me manage the anxiety better? Definitely.
My advice, for what it’s worth, is don’t be afraid to ask for help if you’re struggling with thoughts and feelings. Talk to a friend initially if that’s easier for you. Speak to your GP or a specialist nurse if you have one and maybe try mindfulness and relaxation too, you might just be surprised, but most of all don’t be ashamed or embarrassed. It can happen to anyone and there are lots of things that can help. You are not alone.

Doing well…

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Recently I bumped into some people who I hadn’t seen for years. As we exchanged social pleasantries, one said ‘How are you doing? You’re obviously doing well’ and the other said  ‘You’re looking well’. Now, I’m sure both of these comments were meant as compliments, and I tried to take them as such, but…

The “looking well” comment is a common one and I don’t want to seem ungrateful (in fact these days if someone thinks I look ok enough to mention it then I really am grateful!) However, thanks in part to this government and certain sections of the media who have cast doubts on the validity of those of us with a chronic illness or disability, when someone says “You’re looking well” what I sometimes hear is “You’re faking it” or “You’re not that ill”. Paranoia? Probably. As I get older, I like to think that other people’s opinion of me don’t matter, but it turns out I’m not as tough as I thought and they do! As I’ve written before, much of MS is hidden. You can’t see many of the symptoms, because pain, burning, vertigo, nausea, numbness, vision problems, muscle weakness and fatigue, to name but a few, are invisible. However, this doesn’t make them any less debilitating (think your worst hangover with transatlantic jet lag after a 10K run with bad sunburn and you get the idea!)

The make up bag is a wonderful thing. As are GHD’s. I can make myself look fairly presentable in 10 minutes with a bit of slap and straightened hair. However, for me to go out, even to the local shops, takes a huge amount of effort and planning. If I have something to do in the morning I will try to make sure the rest of the day is clear, if I have something to do in the evening I will try to make sure that I have nothing else to do the days before and after. This obviously isn’t always possible, but that’s the plan! The pacing of my week is a carefully choreographed piece, but sometimes I just don’t go out. The combination of symptoms that day are just too much and I have to stay at home.

As for “doing well”. Yes, in many respects, I am and I’m hugely thankful for that, but every day is a struggle. Sometimes every moment of a day is a struggle. I am never symptom free. They change, they morph, they come, they go, but never leave entirely.  Sometimes they are a nuisance in the background, other times they are all consuming. I never know how I’m going to be on any given day and I have to try not to let that bother me. I have to plan things regardless and keep my fingers crossed that I will be well enough to do it. Most of this revolves around the boy and taking him to his various activities and just running the house. I now have the added commitment of the charity I’ve set up, but I’m able to work most of that around how I’m feeling and it is hugely rewarding and completely worth it.

Occasionally I plan something fun! A trip to the theatre, a gig maybe or even a night out with the girls, but I turn down way more invitations than I accept. I don’t do a lot of the stuff I would love to do, but occasionally I do. A coffee with friends or a concert, but often I decide to wait for the DVD rather than go to the pictures. I make that choice.

So yes I’m doing well. Considering I’ve had this blasted disease for nearly 20 years I’m doing ok. I can choose to give up and do nothing, or I can try to make the best of things. It might be a scaled back version and it won’t have the nights out, the trips to the coast or the dance classes I yearn for. However, it will have the bits I can do. The occasional music gig, the catch up with a friend and the odd football match. I will continue to put the lipstick on and smile. I am grateful. I don’t want pity or sympathy, but an understanding that if I’m out and about it won’t have been easy and if I turn down an invitation or cancel last minute it’s nothing personal!