In her latest guest blog Joanne ponders on Christmas, multiple sclerosis (MS) and ‘me time’...
Like many of us, a #christmas #break was on my list but didn’t happen.
For the simple reason, there has been too much going on. The family has been battling bugs (which has made my #MS rubbish), many festivities with late nights, #travelling, #family politics and eating indulgent food. It has all had a toll. All adding up to putting my #writing on the back burner.
Many recent events can be put down to MS. My rubbish #walking (I’ve realised Prosecco doesn’t help, despite it tasting nice), #speech sounds like I’m drunk (I’m not but everyone assumes I’ve had a few!) #spilling drinks (more noticeable at this time of year when transporting from the kitchen to guests) breaking wine glasses which need clearing up (another sign that things aren’t right) and #forgetting important things like turning my Dad’s home upside down as I convinced myself that I’d lost my wedding rings (they were back at home). I’m also contending with lots of pain.
You can say I’m just a clumsy, forgetful cow and despite resting, I’ve probably pushed myself too much, resulting in the MonSter coming out.
Christmas has made me realise how real MS is. OK, so I knew MS was real. There has been lots of tears. Tears because I know this is my reality as I’m so frustrated. Like a well known sports brand “just do it” is what I want to be like, what I was previously to #multiplesclerosis but I can’t “just do it” because of this stupid disease. My body has given up. As that advert says, we are in that Christmas limbo period, when we’re probably having a break before new year. I’m sat in my pjs (it’s 4pm, hopefully no one is coming around), watching Christmas television on catch up and doing very little because I’m exhausted. I’m getting my break now.
So with a #newyear on the horizon, reflection in the air, what do I want differently for #2018:
MS is a daily battle but remember you only have one shot at being you. Tears have come and gone. I will have good and bad days but doing the best I can is the only option.
There’s no magic pill to pop for MS (I’ve been told take this or eat that). Nothing cures, it may help, who knows. Fatigue for me, feels like I’m swimming in thick chocolate (there is probably too much of it at this time of year!) Recharging doesn’t cure MS fatigue but helps. I wrote my tips for managing #fatigue as a mummy with MS for the #MSSociety. I said “MS is like having a battery that can’t be fully charged, so know your energy drainers, those things that just zap the life from you”. Christmas is an energy drainer. But I know next Christmas (or any big event) has to be different.
In my past #writing, I’ve talked about this. I feel guilty for having no energy. I will continue to remind myself to cut some slack, especially as next year comes with more of little man’s milestones. I live with MS, that’s pressure enough.
This links with the previous point. This year has been full of acceptance. I’ve had grab rails, a walking stick, Blue Badge and a EDSS scale of 6 ( I had to google too!) All physical reminders that I’m no superwoman (I probably wasn’t before MS although I thought I was!) Life might be tough but accept all help and adjustment. Anything for a better life.
This year, #stleonardsyork have been great giving me more “me time”. I’ve tried #arttherapy, #laughteryoga and various treatments like #reflexogy. With my weekly stint of #pilates, I will plan in more “me time” for next year. Everyone deserves it. This year, I’ve used writing as my therapy. I will continue to. Thank you to everyone who believes in me. All there is to say, is have a fab 2018. Let’s hope it’s full of love, health and happiness. And sod resolutions!
Let’s play the MSer’s favorite game of cuts, scrapes and bruises. It’s time for….”How’d I Get That?”
Hmm, a bruise on your arm.
Ouch, that scrape on your knuckles seems painful.
What did you do to your leg?
My point is, living with multiple sclerosis, we tend to acquire many unexplained nicks, marks, cuts, bumps and bangs. Often we can’t explain how they happened.
Having no feeling from the armpits down, I collect skin abrasions like a donation bucket attracts pocket change.
I find marks on my body and have no idea where they came from. I don’t even feel the blood running down my leg.
Are we superhuman?
Do we have high pain tolerance?
Nah, we just have MS.
Are you one with multiple sclerosis who finds unexplained “ouchies?”
Tell us your side – but please don’t get any blood on the keyboard.
Be safe my MS friends.
Is your experience similar to Doug’s? Share your comments below!
In her second guest blog for us Jo discusses MS fatigue and how it can creep up on you unexpectedly...
For those of us with MS, planning becomes second nature. As we only have a limited amount of energy available we know there is only so much we can do before symptoms flare up or we run out of batteries. So if there is a particularly big event approaching I
try to plan a rest day either side to compensate. Simple.
However, I have now discovered a new phenomenon which I like to call ‘the day after, the day after, the night before’. It appears that often the day after a big event or a busy day I actually don’t feel too bad. (Just to clarify a ‘big event’ or ‘busy day’ could be a football match or night out, but equally could be ‘did some housework’ or ‘went to the shops’!) However the day after that? I often feel dreadful! I’m exhausted, the pain is back or my legs are wobbly and I struggle to function.
A recent example of this, was I went to see a band I had always wanted to see. It was ambitious I admit. I rested the day before and on the day itself, got a lift to and from the concert and had an amazing time (it made a change to have my ears ringing for another reason rather than the usual tinnitus!) And the next day? I didn’t feel too bad. Tired from the late night and the extra standing and walking, but pretty OK. ‘Got away with that’ I thought. I was pleasantly surprised and as it turns out lulled into a completely false sense of security, because the day after? I felt awful! Pain, nausea, crippling fatigue…all the usual suspects.
So why is this happening? I have absolutely no idea, but it’s really annoying and makes that whole planning thing a whole lot harder! I now have to try and allow two days rest after a particularly busy day, which isn’t always practical. And if I have a run of a few days with commitments and appointments it means I have to cut everything else right back to have any chance of doing them. It means no washing will be done, meals will be chosen by their ease of preparation (hello egg and chips) and socialising will be cut right back, because these mundane daily activities use valuable energy that isn’t going spare.
And that’s OK. If that’s what it takes to ensure I have the best chance of doing the things I have to and want to do, then so be it. Sadly my hangover days are long behind me (hard enough to stay on my feet and find my words sober!) so the traditional day after the night before is not a problem…but the day after, the day after, the night before? That’s a whole different kind of challenge that hair of the dog or a fry up just won’t fix!
No one should have to suffer with pain and not everyone believes drugs are the solution, so we asked Multiple Sclerosis Specialist Nurse, Lee-Anne Dippenaar for some drug free alternatives that could help relieve pain
Not everyone with MS experiences pain all the time, but most are likely to experience some kind of pain at some point when living with the condition. When pain strikes, it can be difficult at first to decipher what it is, where it’s coming from and what might be causing it. In issue 104 of New Pathways I address the subject of pain in more detail, but if you are someone who wants to try drug-free alternatives that could help relieve pain, here are my recommendations:
It can help with movement, flexibility and posture to alleviate pain. Loss of muscle strength causes deconditioning which worsens pain
See an occupational therapist for adaptations in and around the home so it’s easier to use or access and helps ease the pain a little
When you have pain you probably want to sit or lie down. Small movements will improve blood circulation and ease pain
Advice about posture can help with muscle pain. Poor posture can aggravate pain and cause pain to radiate
Alcohol affects the central nervous system. It can cause sleep disturbances and leave you tired, triggering pain
Smoking causes poor circulation and makes chronic pain feel more intense
Focusing on a hobby or something to distract you from thinking about pain constantly can help
Learn new relaxation techniques, such as listening to music. Practice meditation, mindfulness, deep breathing, gentle walking, singing and being outdoors in nature
Try not to do too much in one go. Plan better and spread tasks out so you don’t overexert yourself and exacerbate pain
Try massage, it reduces stress and alleviates tension in muscles
It involves stimulating sensory nerves under the skin and in the muscles of the body to provide relief
This involves applying pressure to feet and hands, which can relieve stress within the body
Try aromatherapy for relaxation. There is no clinical evidence that these therapies are effective for everyone, but some find it beneficial if done regularly
Avoid processed inflammatory food (sugary, carbohydrate loaded) and eat real food. A well-balanced diet incorporating green vegetables, unsaturated fat and some fruit aids the digestive process, keeps weight under control, and improves blood sugar levels
You can alternate between warm and cold compress techniques to improve blood circulation to the area. It can relax muscles and encourage the healing process
Your GP or MS nurse can refer you to a pain clinic. You could also join a CBT programme and see a counsellor who can help to understand pain and can encourage a positive attitude
Look for your local MS group or an exercise group. Ask others with similar symptoms for advice. Help family understand what you are going through so they can support you
In issue 104 of New Pathways magazine Lee-Anne talks more in-depth about the different types of pain, how to cope and how to manage it. To read her feature, subscribe to New Pathways today.