and what do you do to cope on bad days?
I’ve got three young girls and I’m lucky I’ve got my mum and my inlaws who are always willing to help when I have those random attacks which we dont know is ms or not. Not yet anyway. How much support do you guys get from your spouses, mine is very laid back but takes the pressurse when I need him too. I am quite impatient and hot-headed thats why I really dont want this ms diagnoses…
I’ve not been diagnosed yet but about to ask to see a neurologist. I have one daughter due to start Primary school next month. My hubby works long hours so I am the main responsible adult. I do have family near by that I can call on in an emergency. My main problems at the moment are dizziness (not able to ride my bike for fear of falling off and little’un just got her first bike); forgetfulness: this causes various domestic problems, the main one being forgetting to use food before it goes off. I also get words mixed up. I notice this especially when in stressful parenting situations, trying to discipline her and getting tongue-tied, or when tired - I’m the main bedtime story reader and I get words mixed up or even say a different word that is written. I’m not dyslexic, am an avid reader and it’s quite concerning to be tripping over language like this. Even my typing is suffering (I keep havibg to delete and re-type…I left that last mistake in deliberately). I find I’m often too tired to play games,shy away from going out to play often and sometimes get too easily irritated. A few years ago, I was suffering from depression. I got some help for a few hours a week from an organisation…I think it was Homestart. A volunteer would come and keep us company, let me do a bit of housework unimpeded, just take a bit of pressure off and have chats. It helped. I’m now over depression but I think I’m still suffering from anxiety, especially in light of all these odd health issues that keep ticking the MS symptom boxes. Parenthood isn’t easy anyway but health challenges mean needing to ask for -and be able to receive - a bit more help and support.
I have two, who are five and three years. I’m very lucky in that hubby can work from home if needed (he has a very supportive employer who knows all the details), and he also has flexible benefits so takes extra holiday each year. My eldest is at school and the little one is at nursery three mornings, but the nursery is very good and he can do extra hours at short notice if required (I’ve never needed it though). My in laws are just up the road and my parents aren’t far away, but so far I’ve only had to ask for help once, when I needed to get back from hospital and I was told my eye sight was too bad to drive myself! My mum picked me up and I left my car at the hospital for hubby to pick up later! I think you need to have a good support group around you and this means being honest. I don’t tell the whole world I have MS, but I have told some of the school mums as I know they can help me out with school runs when needed. It’s hard, but we have to learn to adjust to be able to cope. I make sure I play with my boys actively when I’m well, and cook proper meals, so when I am bad I don’t feel too guilty for sticking them in front of a film and feeding them pizza for a day! X
I agree with Emma-C: Mummy friends are essential! I made an effort to socialise with some of the other pre-school mums when we moved to our current home and now I have a few good ‘mummy friends’ I can call on if I ever really need help. I don’t drive and most of them do, for example. Being able to keep clear boundaries with your children helps. I have a background in Montessori (pre-school education) which has helped me partially with parenting. I’m also able to tell my 4 year old when I need quiet time. She’ll be within earshot, playing in her room or watching TV whilst I rest on my bed (but don’t sleep!) and she’ll respect that. I usually need it in the morning. She wakes up like switching on a light whereas I need time…and a cuppa…to come to. If I need to be anywhere I’ll set my alarm early to give myself that extra 30-45 minutes of peace. Being honest with little ones about how you feel also helps. Children can be amazingly compassionate if you respect them and are open with them. We are showing them how to become fully realized human beings and with every thought, word and action we take, we give them choices about how to think, speak and act themselves.