Our newest guest blogger, Jo, gives a very honest and touching account of her life with multiple sclerosis (MS) and coping with a devastating loss…
I was (provisionally) diagnosed with MS five days before my wedding. I’d been having symptoms for about 6 months before so when a neurology appointment came through for the week of the wedding we thought I’d just be sent for tests so it was worth getting the ball rolling. After meeting with the neurologist he did send me for tests, but he also dropped the bombshell that he thought I had ‘probable’ MS. That was twenty years ago and the diagnosis wasn’t actually confirmed for a couple of years as the tests were initially inconclusive. However, my symptoms had become more intense and the relapses started in earnest, so when the diagnosis eventually came it was a huge relief that I wasn’t imagining it all!
Fast forward 7 years and I had a run of back to back relapses that completely floored me. I had many months in bed and had to stop work. Fast forward another 3 years after disease modifying drugs finally being approved by NICE and I started to improve. Relapses were less frequent and I felt strong enough to try for the baby I had always longed for. The pregnancy and birth were challenging, but completely worth it, when my son was born in 2005.
Life carried on as a new family of 3, with its usual ups and downs and MS as a constant, unwelcome visitor. Until September 2013 when my husband died suddenly and unexpectedly of a heart attack.
So, there I was, a widowed, single mum with MS (surely there’s a reality tv show waiting to give my house a makeover??) This was not the plan! My whole world had been turned upside down.
I had to try and find a way to manage my MS, the house, life in general with the added responsibility of raising my son alone, all with the complication of grief.
As we know stress is not a friend of MS. In fact it can often make symptoms worse. For the first year I got through in shock and on adrenaline. Trying to find my way and develop a ‘new normal’ for us. Pacing myself became a whole new challenge! Overnight I became solely responsible for everything. There was no longer someone there to help when I was having a bad day.
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! My repertoire is still not very exciting, but it is generally edible. It wasn’t just my lack of desire to cook, but I had to find ways to do things like drain saucepans and the issue of cooking a meal, but often being too fatigued to eat it became a problem. Quick and easy meals are a must!
There were other household responsibilities I had to get to grips with. Fortunately I’d always managed the finances, so that bit was ok. Tesco still deliver so that was the shopping sorted too. The other household things have been a bit more challenging, but I have a list of tradesmen who can do things and my son is now old enough to cut the grass and wash the car…for a small fee!
One of the biggest challenges has been that I have had to learn 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 was lovely, but when you really do need help it can be incredibly difficult to actually ask someone. 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 and childcare while others 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 says ‘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.
And this was brought into sharp focus in the second year as everything came crashing down when I had a huge relapse. I had to ask for help and let people help me. I had no choice.
I don’t know why I find it so hard to ask for help, as when I’m well enough I am always happy to help someone if they ask me. I will look after friends children if they get held up, pick up shopping or give lifts if I can. So why do I find it so difficult to do the asking? I guess maybe I see it as a sign of not coping and 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 nearly 12 year old who is always looking for ways to earn money. 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 some wonderful people just waiting to be asked.