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Have wheels will travel

Having a life limiting illness isn’t easy. The hardest thing is handling my frustration over things I can’t control. It’s especially hard when you were so independent, head strong and you’re not chuffing old (well I think so!) so dealing with poor mobility is tough when you just want to do things but your body has other ideas.

My love of walking out in the countryside is a love that has changed because of my weakening mobility.

OK before MS really hit my mobility, I was no Ray Mears but I loved my walks for their sense of achievement and usually a cracking view. I’m now thinking, how accessible is it?

I’ve just come back from our family holiday to Cumbria. The Lake District is renowned for great scenery, hills galore and with this heat wave we’re having, it looks even lovelier. No wonder Beatrix Potter based her books there. It’s stunning.

I knew going on holiday was going to be hard emotionally. I don’t want to feel sad but inside I was crying as l feel I’ve lost the ability to love the countryside.

I’m reading a good book by Schwarz. She says “it took me a long time to understand if I want to heal emotional pain of my losses, I was going to have to work on changing the way I deal with life.” That is so true.

I’ve always been Miss Organiser. When you have a disability, you need to plan ahead even more. I looked at places I’d like to visit, places for little man and his daddy. I was selfishly interested in their accessibility. I knew conserving my energy was key to helping mummy recharge. I knew I wanted to see the countryside and researched into an off road scooter which would not only conserve my energy as well accessing the countryside. Freedom Wizard is a charity which is worth looking at. The hardest thing is handling my frustration over things I can’t control. It’s especially hard when you were so independent, head strong and not chuffing old (well I think so!) so dealing with poor mobility is tough when you just want to do things but your body has other ideas.

Not to sound rude, just because you’re disabled you don’t always want group organised activities. You just want to do your own thing. Hiring a tramper off road scooter from the National Trust, was ideal. I got to experience the countryside. I hope hiring these become the norm as it’s fab.

I might not be sprightly on my feet anymore but hiring the scooter meant I had wheels! I could travel. And travel I did!

#ms #multiplesclerosis #chronicillness #lifelimitingillness #spoonie #spoonielife #accessible #accessibility #mobility #scooter #tramper #offroad #offroadscooter #countryside #nationaltrust #tarnhows #cumbria # #schwartz

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Designing for an easy life

A large brownfield site to the West of York’s railway station is to redeveloped for homes, office, leisure and retail use. The project is called “ York Central”.

Those running the project wanted local input. If you were designing from scratch what would you consider?

I wrote my views. They asked if they could publish on their site, here’s what I wrote for myyorkcentral.org blog.

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Dealing with a new diagnosis.

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Forgive me for not writing for a bit. I’m on an emotional rollercoaster. 

At my last neurologist appointment, my new diagnosis of secondary progressive MS was given. I knew things had changed, but wasn’t anticipating it. 

I felt like I’d been hit by a wet fish over the face (I like to add I’ve never been hit by a fish! I don’t even know where the nearest fish is! Probably in a chip shop!)

Defining the diagnosis isn’t easy. The general test is how far can you walk now versus a few years ago. I think back about my holidays with little man and use this as the yard stick. When was last time I had a relapse?  Are they just on-going symptoms or is it a relapse? I was diagnosed with relapse remitting MS four and a half years ago. They say the vast majority who get diagnosed with RRMS go onto to develop secondary progressive where you don’t have periods of symptoms, the disease progresses. But I want anticipating my new label. I suppose I just wanted the feeling to bugger off. 

My neurologist said “live the life the best you can”. 

WTF is that I thought, obviously I didn’t say. I’m not going to shoot the messenger.

I thought it might be wise to review when I wrote about my initial diagnosis year to help me with my new phase. I linked the five stages of grief, which are:

Denial

Anger

Bargaining

Depression

Acceptance

Like my friend and mentor, Barbara Strensland says the stages provide guidance but annoy me too because they seem too perfect.

I’m not in denial. I have a life changing condition so naturally I feel angry. I’ve attended pity parties. I know I’m still at one. But the biggest question I have, does my new diagnosis change anything? Will it affect relationships with my husband, little man, family and friends? I now feel, I have more permission to sod it! Anger? Acceptance? Who knows!

I’ve had MS for a while so been adapting but little things get to me like applying make up and not looking like Alice Cooper, wearing pale pink nail varnish so it doesn’t matter if I make too much of a mess, having trouble squeezing bottles to wash hair, messy present wrapping or wearing hoop earrings as studs are a git to wear. I feel down as I’ve lost the ability or struggle to do things. I feel useless. Maybe I should put a new stage in, or it maybe it’s acceptance that this is happening to me?

Swallow my stubborn pride and focus on what I can do. You just want an easy life but there are obstacles in the way.

I read something from the #MStrust which is so true. “People get hung up about the label… no matter how you label your MS, it is not going to make any difference to how you feel”.

Regardless of what to call where I am, I’m still the girl I was. 

 

#ms #multiplesclerosis #msawareness #stop s #diagnosis #secondaryprogressive #grief #label #symptoms #obstacles #spoonie #spoonies #spoonielife #autoimmune #heath #healthawareness #children #parenting #parent #mum #mummy #blog #writing #barbarastrensland #mentor #awareness4all #disabled

Parenting

Very honoured #theworldvsms have published what I’ve learnt about #parenting with a #chronicillness.

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Cry if you want to 

If you want to cry, have a pity party, it’s normal. Just do it! Probably every parent has been there and most likely every MSer. Don’t put pressure on yourself!

Routine

Life as an MS Mummy is unpredictable, the last thing you probably want is having a regimented life especially as nights are long and you’re zapped of energy. A routine pays off. Mine is bathing little man before bed, a signal for bedtime. All night feeding, whatever the time happened in his room, so little man got used to his bedroom even when he was sleeping in our room. The transition from our room to his room was probably easier because of familiarity. Trying to stick to the same time each day helps. As a younger child, we still have that routine but now includes story time. 

Reserve your energy

You want to work sleeping out, but every little person is different. My advice is do whatever works. We tried story reading at an early age and he is still a book worm! In the early days to sooth little man, we placed a tablet under the crib which played nursery rhymes. Little man hated day sleeping in his cot, so slept in the buggy which helped conserve my energy and now sleeps on a toddler bed or sofa. I rest when little man sleeps and when possible, organise family to take little man so I can rest.

Be prepared

Downstairs, there are always enough spare clothes, pants, vests and socks (or baby things when he was younger) medicines and food. My kitchen blackboard helps with reminders to help my brain fog.

Me, me, me!

It took me several months to realise after having little man that I forgot about me. So whether you get a haircut, buying something new or getting rest, it all helps on feeling better about yourself.

Rosalind Dorlen said “handling chronic illness is about learning to live in balance”. I remind myself of this. Good days, you act like a super hero and on bad days, you feel like a rubbish parent for not having any energy to do anything. I still have the same challenges as any parent but MS puts another spin on things. As I said in my first tip, don’t put the pressure on. I’d love to know how you cope looking after little people?

#multiplesclerosis #ms #chronicillness #diagnosis #poorlyparents #energy #mummy #daddy #mum #mommy #mom #parent #parenting #tips #symptoms 

Read more/follow:

poorlyparents.wordpress.com

poorlyparents on Facebook

@Mummywithmsjmhc on Twitter

 

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How it all started

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MS Awareness Week is this week. As many of you know, I live with this condition and write as a MS Mummy as couldn’t find anything to help looking after me whilst looking after a little one. There are some great sites to understand multiple sclerosis, here are a couple:  www.mssociety.org.uk, www.ms-uk.org, www.mstrust.org.uk, www. shift.ms.org, http://www.overcomingms.org, www.theworldvsms.com

As my therapy, it helps me think as I write about issues when looking after my little man when managing a chronic illness. I write and have written for various MS charities and parenting outlets. I’m no expert on MS or mummy stuff but hopefully my writing brings another perspective on living with a progressive life condition and parenting. Hopefully it helps.

Read more/follow/ share or like my page:

poorlyparents.wordpress.com

poorlyparents on Facebook

@Mummywithmsjmhc on Twitter

 

This is my next piece which will appear on a local parenting website (York.mumbler.co.uk).

Joanne Chapman is juggling her life long condition, Multiple Sclerosis (MS) with being a stay at home Mummy.

It doesn’t seem like two minutes ago little man was a baby, he’s now just over three. I fell pregnant with little man, six months after my multiple sclerosis (MS) diagnosis. Two life changing aspects.

Multiple Sclerosis is a chronic life long condition causing central nervous system damage. Your nerves are protected by a fatty tissue called Myelin, which in MS, Myelin is lost in multiple areas, leaving scar tissue called sclerosis, which is where the disease gets its name. As nerve fibre is destroyed, it affects the ability to send messages from your brain around the body. Sadly there is no cure and because of the damage, it causes many symptoms. As the damage is not the same, MS is different for everyone. The most common symptoms I have are extreme fatigue, walking and balance difficulties, numbness, tingling and nerve pain, muscle weakness, cognitive issues, bladder weakness and emotional issues. MS affects around 100,000 people in the UK. Diagnosis usually happens in the prime of your life.

With these two life changing events, I wanted to understand how do to be a parent with a chronic illness. With tips on parenting (York Mumbler is great for local parenting information) and multiple sclerosis, I found nothing that merged the two areas. I started to write about what helps me manage my chronic illness and parenthood, for my parenting blog (poorlyparents.wordpress.com) MS charities and parenting outlets.

So what does it mean being an MS Mummy? Here is just an insight …

– Tired of being tired. Plan rest. Fatigue is a common symptom. It’s not just feeling tired. If I’m yawning, it’s not because I’m bored of you!

– When little man was in nappies, I’d rather smell poo, than have the energy to chase a a little person!

– Rest is key and you might need the loo more often. Knowing the nearest and best loo and break stops, and did I mention parking is vital?

– Many MS sites talk of feeling like a warrior, you’re a warrior when showered, dried your hair and even put on any make up.

– You think whether it’s worth negotiating the car seat, parking and going out, as it can mean more effort, so online it is to conserve energy.

– Hospital and doctors appointments are meant to help. But it’s tiring.

– Will a bouncy castle be enough support if I lean on it?

– MS makes your mind go to mush. It’s called brain fog. You’ve lost the car again. It’s a game for mummy and little man. The only time I know where I’ve parked is after the summer holidays when the roof box is still on.

– With your garden being attached to your home, it becomes your best friend.

– My carpet is not clean, I’m a MS mummy.

– Sod the advice, you need caffeine, drink the coffee!

I’d love to know your tips on making life easier when being a parent?

 #multiplesclerosis #ms #chronicillness #diagnosis #poorlyparents

#mummy #daddy #mum #mommy #mom #parenting #tips #mumbler#spoonie #spoonielife #chronicillness #writing

 

Thank you for listening. Means a lot. 

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