This is a special post written by my friend Vicki.
I’ve suffered from a condition called Endometriosis since my teenage years. It’s a disease that affects 1 in 10 women and, in very simple terms, means that tissue usually contained inside the uterus grows outside and can cause bleeding, inflammation, infection and pain. I have also recently been diagnosed with Adenomyosis, a related condition affecting the muscle of the uterus itself.
These conditions affect women in different ways, for me, a flare up means not just excruciatingly painful and heavy periods, but pain every day. Crippling pain, to the point where I can’t walk and am reliant on hard core pain medication. I get spasms throughout my body, especially my back and legs. I have pain emptying my bladder and bowel and I lose sleep, lose appetite and suffer with headaches.
This is not fun. It’s a chronic condition that currently has no cure, the best women can hope for is “fire fighting” the symptoms as and when they appear.
Now, after 20 years of fighting during which I have been through 6 surgeries, all manner of hormonal treatments and even a forced menopause I am facing the decision to have a hysterectomy in the hope of regaining some quality of life.
For me, the hardest thing is parenting through this time. After once being told I would be likely never to have children, and certainly not without medical assistance, I know I am very lucky to have two, beautiful boys (aged 11 and 3) who were both conceived naturally and born without incident. Turns out my body hadn’t listened to the consultants. I hear heart breaking stories of women with this condition who never have their longed for children and I want to hug each and every one of them.
So I have my boys, and it’s wonderful, but…but…it’s also hard. Really hard. For the past few months my pain has been constant. My boys see me in pain. They know the terminology, they know when mummy needs her medicine. They have stopped asking me to play in the park, or take them swimming. They have stopped asking me to run with them, cycle with them, jump on the trampoline with them. They know I can’t do it. I hate that I can’t do it.
I hate that they see me upset when we have yet another hospital appointment which leaves me with more questions than answers. I hate that they see me curled up crying on the sofa when a busy day leaves me in pieces.
I do know though that I’ll get through this, like I have all the other times. I also know that it’s healthy for us to be honest with the boys about my condition. Healthy for them to know that sometimes life deals you a rubbish hand and healthy for them to see how, as a family, we pull together to get through it.
It’s important to think about coping strategies with any long term health problems, especially if you have a young family, so here are my top tips for managing these times, I am sharing them in the hope they will help someone else:
1. Ask for help.
It’s so tempting to put on that fake smile and say “I’m good thanks” when asked how you are. Be honest, tell people what’s happening and ask for help if you need it. The people around you should be the sort of people who want to help – otherwise you need new friends – so whatever it is, ferrying the kids to groups / school for you, helping with cooking, doing some shopping, ask. You’ll be glad of the help and they will be pleased they could be useful.
This has been so key for me because when I am in a slump, things like housework, chores and shopping just don’t get done as easily so being organised means the house only half falls apart 😉 Use online shopping, it’s so much easier than trying to get round a shop and once you have done one these companies save your lists so every time afterwards should be much easier. Get the kids involved in chores too – they should and can help, even our three year old can strip his bed and put his clothes in the washing machine – every little helps.
3. Eat well
This is tough when you don’t feel great. But eating well is not just important for you and your health but also the children too. So if you do have a good day, BATCH COOK, it’s brilliant because if you make double and freeze half then another day you’ll have dinner made and all you’ll need to do is turn on the oven! We all have days where we turn to beans on toast (nutritious meal by the way!) but having pre prepared salads in the fridge can turn a fairly beige plate of food into a healthy rainbow plate with minimal effort. Kids love getting involved with food too, and on a bad day I have sat the boys at the table with fresh fruit and veg and they’ve gone to town peeling, chopping and eating – they were happy and I knew they were eating some good food while I could sit and supervise.
4. Work Balance
If you are employed make sure your management team know the situation. In my younger years I lost work because I hid what was going on and couldn’t explain my time off sick. Honesty will go a long way. I am self employed now which is good in that I don’t have to explain anything to anyone, BUT, I do have to think about what happens when I need time off for treatment – no sick pay for me – so being careful with budgets, putting some money aside for emergencies, or even paying for insurances can all be ways to manage the lean weeks/months.
5. Find Your Tribe
In my work as an antenatal practitioner I always tell parents to find their tribe, or their village. Their group of people who are going to help them through the first weeks and months of parenthood. This is not just true for parents, it’s true for people with health problems too. You need to find a group of people who all, intimately and honestly understand what you are going through. They know the pain you feel and they know the treatments you are having. Social media has many faults, but what is can do so well is bring people together. My Facebook, Instagram and Twitter Endo support groups have been my absolute saviour. When I am at my lowest I know there are women who I can reach out to, who can give me (virtual) hugs, and always know just what to say.
Wherever you are, whatever situation you are in now I truly hope you have a tribe. I truly hope you have people around you who support you and I truly hope that you find your way through your troubles. If, like me, you have children, know that actually they need very little. A house, some food and the most important thing, your love. Be honest “I am hurting today but I love you and what would make me feel better is if we snuggled on the sofa and watched your favourite film”. Everyone is a winner.
Love and light to you all.
Vicki is an antenatal practioner and breastfeeding counsellor, and has two wonderful sons. Vicki suffers from Endometriosis and owns a content-filled webiste which you can access below, along with her social media pages.