Finding a ‘new normal’

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So, there I was, a widowed, single mum of an 8 year old son (and I’ve got MS too, surely there’s a reality tv show waiting to give my house a makeover??) This was not what I’d sign up for! This wasn’t the plan! Things couldn’t carry on as before, because everything had changed. Yes, routine was important, but we had to try and find our ‘new normal’.

For starters, I had to learn to cook. I hated cooking! My hubby loved to cook and I most definitely did not. One of my son’s greatest concerns in the early days was…who is going to cook tea? (His second was, who’s going to drive us on holiday?) I wrote down a list of 7 meals I could ‘cook’ (arranging salad on a plate and putting frozen chips in the oven count as cooking don’t they?!) to prove to him we would not starve! It’s been a bit hit and miss, and I still don’t enjoy it, but I’m definitely better than I was. I’m trying to be healthier and a bit more adventurous. I have discovered kale! Not adventurous, but healthy as it’s some kind of superfood apparently (and it just needs rinsing and sticking in the steamer…my kind of cooking!)

There were other household responsibilities I had to get to grips with though.  Fortunately I’d always managed the finances, so that bit was ok. Tesco still deliver and we are fortunate to have good local shops, so shopping was ok too. The other household things have been a bit more challenging.  I have successfully changed light bulbs, installed a carbon monoxide detector and built 2 flat pack chests of drawers. The wardrobe assembly was less successful…but luckily my lovely neighbourly joiner came to the rescue! 

And this is the tough bit, I have had to swallow my pride and accept and ask for help. This doesn’t come easy to me. In the first few weeks after my husband died I was inundated with offers of ‘If you ever need anything, just let me know’ which is lovely, but when you really do need help it’s incredibly difficult to actually ask someone. (Especially if you’re still having trouble making decisions!!) Who do you choose? Did they really mean it? And many of those offers did disappear and those people faded into the background, but a small amazing group of friends and family have absolutely been there. Some offering to help with lifts, childcare and cutting the grass, while others have brought chocolate, a listening ear and a hug. All hugely appreciated, but I have found it is much easier to accept help if it is a specific offer. For example if someone asks ‘Would you like me to cut the grass?’ or ‘Let me know if you need a lift somewhere’ or ‘Would you like me to do the school run?’ I know that even if I don’t need the help at that precise moment, I know who to ask when I do. 

I don’t know why I find it so hard to ask for help, as I would be the first to help someone if they asked me! I will often look after friends children if they need it, or pick up shopping for someone while I’m out or give them a lift somewhere if I can. ‘It’s no problem’ I say. And I mean it! So why do I find it so difficult to do the asking? I guess maybe I see it as a sign of not coping, not wanting to put people out, rather than seeing it as just what friends do. We help each other out. I want to be an independent superwoman doing it all, but I am learning that isn’t actually possible!

So, my cooking is improving, my diy skills are a bit iffy and I have a volunteer grass cutter (and a now nearly 10 year old who is getting rather good at it!) I am also learning that accepting help is not a sign of weakness and I don’t have to do it all myself. In fact, there are lots of wonderful people just waiting to be asked.

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Reflections

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Following on from the amazingly positive feedback I received from my first blog post, I am approaching my second attempt with some trepidation. It’s like that tricky second album after the debut one goes platinum!

So here goes! Please be gentle. 

Just as I hadn’t anticipated retiring from work at 28, neither had I expected to become a widow at 39! My husband sadly died of a heart attack in September 2013 aged 51.

I know it sounds a bit of a morbid topic, but hopefully it will give a bit of an insight into what it’s like when widowhood is thrust upon you, especially at a relatively young (!) age. These are a few of my reflections on those early days. 

I couldn’t make a decision

My husband died suddenly and I was in shock, getting by on not much sleep and quite a lot of adrenaline and caffeine and had the daunting task of organising a funeral for what turned out to be nearly 300 people. You only get one shot at getting it right and I wanted it to be so right, but in the midst of the shock and grief I seemed to lose the ability to make a decision! Which is a bit of a problem when there are so many decisions to be made! My dad suggested I try and make decisions in the mornings when I was less tired. It was good advice, so I tried to make sure I left decisions until the morning where possible.  Wise man, my dad. 

You’re so young

Everyone is always surprised I am a widow, even the funeral service providers. My amazing mum and dad came to stay in the early days after my hubby died and one or both of them would come to appointments with me. Whoever I met with always assumed it was my mum or dad they should be dealing with. The best example was when me and mum were called in for our appointment with the registrar early, while dad parked the car, and mum asked the receptionist if she could tell her husband where we were, when he arrived. There was a brief look of horror on her face as she assumed it was mum’s appointment, not mine! A reoccurring theme that people are always surprised by a young widow! I understand why, but it can lead to some difficult and sometimes upsetting conversations.

Have plenty of tissues 

I ended up with a box of tissues in every room of the house. The tears would come frequently and without warning. My son, who was 8 at the time, would bring me a box of tissues whenever the phone rang! Every time I opened a card with kind words in, read a nice email or a friend called, that would set me off! Or an overwhelming wave of sadness would just hit me. It’s so tiring! The grief. The tears. It was a milestone when I realised I’d got through a whole day without crying! It’s a perfectly ‘normal’ reaction, but exhausting. 

Get a good filing system

It’s boring and practical but the amount of paperwork that you have to deal with is immense! It is the strangest thing. You experience this hugely traumatic life event…the death if your husband, and then you are plunged into this world of registrars, funeral directors, cemeteries , death certificates and paperwork that you are completely unprepared for. Yet you’re kind of expected to know what to do. There are the endless phone calls to companies, financial institutions and government departments explaining over and over again what’s happened. It makes it much easier to deal with if you can keep it all in order. 

Beware the postie

In those very early days, the post would often bring beautiful cards, bouquets of flowers…and brown envelopes with windows! I dreaded those ones! One day a letter would say how much I would be getting and next day there would be another saying how much I owed them! The tax credit system is no more gentle to widows than anyone else! My particular favourite phone call to the tax office was when I rang to repay an overpayment (a joint claim cannot convert to a single claim apparently and they were quick to ask for their money back!) and the chap said, did I just want to pay half and they would get the rest from my ex husband. I explained they’d have trouble as he was my late husband not my ex! A minor detail for them, but a huge detail for me. 

Choose the music wisely 

My husband had always referred to ‘Sweet Home Alabama’ by Lynyrd Skynyrd as his funeral song. Every time we heard it he would say ‘This is my funeral song. I want this played at my funeral’. I have no idea why! Anyway, the only thing I knew for sure when arranging his funeral was that this song had to feature. So it was played at the end if the service. I’m sure many of the congregation probably don’t remember, but I do. And as an avid listener of Radio 2 most days, that blooming song gets played loads! I must hear it at least once a week! (You can guarentee at least every couple of weeks someone requests it on Simon Mayo’s show on a Friday!) Music can be so evocative and I only have to hear the opening bars and I automatically think of him. In the early days, weeks and months it would make me cry and I would have to turn it off, but I’m getting braver these days…most of the time!

What now?

So, what now? The funeral was over, but my whole world had changed forever. I was now a widow and a single mum. This wasn’t the plan! My son and I had to begin to try and find our ‘new normal’…

MS Awareness? All too aware!

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Today is World MS Day, so I thought I would do my bit to help raise awareness of this complex and often misunderstood condition.

I have had MS for nearly 20 years now, so it might sound strange for me to say that I had forgotten just how bad it can be…but boy, the last few months have reminded me!

It began in the mid-1990’s, when I was working as an OT in London. Fresh out of college, I was out for lunch with my colleagues, when I picked up my drink my hand started shaking as I tried to drink it (diet coke, nothing stronger!) Bit odd, I thought. Must be a trapped nerve. Another day, my left foot felt a bit numb, like I was wearing a sock when I wasn’t. Again I didn’t think much of it. I also started feeling really quite tired, but again put it down to long days and travelling to York every other weekend.

To cut a long story short, I saw a neurologist a few months later (the week before I got married!) who said it was ‘possible’ I had MS. Many more months of tests and hospital visits and that turned to ‘probable’ until I was finally diagnosed with relapsing remitting MS a couple of years later. It was actually a relief when I finally got a diagnosis, as a lot of the symptoms were sensory and I was beginning to think I was imagining it! The next few years I had periods of relapse, where new symptoms would appear followed by periods of remission when I would feel much better and symptoms would subside. However, after each relapse I didn’t quite get back to how I was before. It continued like that for about 4 years and then I had 3 back to back relapses in one year which left me so physically limited I had to stop work.

The following year was tough, but then I started some medication that slowed down the relapse rate and I started to get a bit stronger. The MS became more manageable. Yes, I walked with a stick by then and I had to pace myself in everything I did, but I found a way to cope. So I had a baby! Now, it is known that pregnancy hormones seem to ‘help’ MS and I got through the pregnancy relatively unscathed, but after giving birth there is often a ‘rebound’ effect and that combined with sleep deprivation meant I had a relapse a couple of months later. Motherhood was (and is!) a challenge, but it was the best thing I have ever done and that baby has grown into my lovely, funny, caring boy.

That was nearly 10 years ago. Since then, it’s been a pattern of relapses and remission, but generally the relapses have been further apart. The symptoms are still there though. Although I walk outside with a stick and use a mobility scooter now for longer distances, the most debilitating symptoms are often the ones invisible to others. There’s periods of numbness in nearly any part of my body, pins and needles for hours at a time, neuropathic pain, trickling feelings like there’s water running down my skin, crawling feelings like there’s ants crawling up my leg, dizziness, vertigo, balance problems not to mention the cognitive and memory problems. Vision problems too. I’ve had repeated bouts of optic neuritis as part of relapses, which has left me with sight problems and I’m now slightly colour blind (watching football teams in yellow play on a green pitch is tricky!)

Probably the most debilitating symptom is the fatigue. And by fatigue I don’t mean a bit tired. I mean a complete bone tired that comes on without warning. The best thing I can compare it to is jet-lag combined with when you’ve overdone it at the gym or been on a long run when you’re not used to it (from what I remember!) That complete physical and mental exhaustion that means I just can’t do anything. And with MS it comes without warning and not always conveniently in the evening when I’m at home, but maybe when i’m half way round a shop, or part way through a meal. I can be cooking tea and then not have the energy to eat it! It might last for 10 minutes or weeks, but no amount of positive thinking can get me out of it. Only rest will do. Which is frustrating! Especially when the sun is shining and I feel compelled to wash everything in the basket and hang it on the line!

So, this year, following a virus, I had the biggest relapse I’ve had for years, probably since I stopped work, and it was a shock! The vertigo, the pain, the numbness and the crippling fatigue. Getting out of bed was a chore. Going to the kitchen from the lounge was exhausting. I just felt so ill. I saw my neurologist and MS nurse, but they couldn’t offer me anything to help. I’ve just had to ride it out. A lot of rest and having to rely on the help of amazing family and fantastic friends. Nearly 5 months on, I’m improving…slowly. Not quite tap dancing yet (!) but I am thankful for any improvement.

So, that is an abridged version of my MS ‘journey’ so far. Why have I shared it? I’m not entirely sure. I guess on this World MS Day I’m trying to raise awareness of a disease that is relatively common, but many of the difficulties it causes can’t be seen. I don’t want sympathy, but if it brings a little bit of understanding then that’s great.

Welcome

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Welcome to my new blog!