Top 10 weird things I do because I have Raynauds

I’ve always been someone who feels the cold, but since being diagnosed with Raynaud’s I’ve realised that it’s not something I should tolerate, or allow it to control my life. There are things I can do to help make my life a little easier. That means I can do some weird things that other people might not get. I mean, we all do weird stuff don’t we? But before I ramble about us all being weird and the meaning of normal, here’s the top 10 weird things I do because I have Raynaud’s.

  1. I turn the shower on extra hot at the end to give me warmth once I get out. It’s probably a good job we have a shower that attaches to the taps, otherwise R would get a shock.
  2. Use the same hand dryer that someone else has just used when in a public restroom. Because it’ll already have heated up. The same goes with taps.
  3. I leave the heating on in the car on full, even when I’m getting hot (because I’m wearing 5 layers and a scarf, hat and gloves) on the way home from the pre-school run so that when I get in the car for pick up it might not be quite so cold.
  4. Take 3 blankets for yoga for the 5 minute relaxation at the end of the session so that I don’t get cold. I already wear yoga socks and yoga gloves.
  5. Gloves! At the supermarket. Just so that I can rummage in the reduced section of meat. And y’know, pick up a carton of milk without getting numb fingers.
  6. Take vegetables out of the fridge about 3 hours before I need them so that the cold doesn’t hurt my hands when I chop it.
  7. Pack slippers in my bag whenever I go to someone else’s house. I also pack extra layers (including extra socks even though I’ll already be wearing tights under my jeans and a pair of thick wool socks).
  8. Wear jumpers and jeans in the summer, especially if going to the supermarket – or anywhere with air conditioning! I even got cold in Thailand.
  9. You’ll find blankets in my living room all through the year. Hygge – not just for winter.
  10. Forego breakfast to scrape the car so that I can then sit by a radiator afterwards to warm my hands before I drive.

 

top 10 weird things I do because I have raynauds title image with blanket background. img credit Kelly Sikkema

 

Do you have raynauds? Is there anything you’d change? What’s your top 10 weird things?

Being a Raynaud’s Mum

The thing with being a Raynaud’s mum is not many people know what Raynaud’s is. When you go out all bundled up with your child wearing shorts people look at you like you’re crazy. Like some kind of irresponsible parent for taking the time to ensure you’re warm but not your child. There are so many things I have to consider before leaving the house and I put so much thought in to what I’m wearing it’s unreal. Thank goodness I’m not #instaglam because I’d have real issues! Then there are the other things associated with being a Raynaud’s mum…

What Raynaud’s actually is

For those who don’t know what Raynaud’s is a quick summary would be that it’s something that affects the circulation or blood flow in your extremities. That includes the obvious – fingers and toes, and not so obvious, ears, nose and nipples! I get it in all but the latter, but it’s been a while since Oliver stopped breastfeeding! Temperature changes really impact it, cold weather and stress/anxiety are also huge factors.

For me, that means my fingers and toes go white and numb. It means that I get immense pain through my hands and feet. I also get numbness and pain in my ears and nose. I have to wear loads of layers and keep my house warm. I have to wear slippers pretty much all year round. When it’s cold it takes me a long time warm up.

What being a Raynaud’s mum means to me

Being outdoors in autumn and winter is genuinely uncomfortable for me. It becomes so difficult that it affects my mood. I’m grumpy, I’m tired and I am just in so much pain I can’t do anything. That makes it hard for me to do things like puddle jump walks, collecting acorns and conkers. Going to the park when it’s cold. Days out that involve being outdoors for periods of time. Especially in exposed areas where it’s windy. The cold that you’re thinking of is probably the frosty chill in November, but that is the cold I feel in September.

 

At home when it’s ‘cold’ I’m often found under a fleecy blanket. Our living room is North facing which means it’s not very warm. The floor is also concrete which makes it even colder. Leather sofas are a no-no. The kitchen floor is also really cold too and even with slippers on I get numb toes. That means I’m not very fun once the cold sets in.

 

Raynaud’s mum guilt

I feel awful for much of the year for how boring I am. I can’t do a lot of the things that Oliver wants to do. He loves the outdoors. He loves nature. It’s really not fair on him that we can’t do the things he wants to do. I’m starting to invest in things that will help make my life easier. The only thing is that all of these things cost money. I’ve been wearing the same clothes for years and we don’t have a great deal of disposable income. We’re not impoverished or anything, but we are living on a single income and planning a wedding.

 

 

Being a raynauds mum - hat scarf and gloves every day from September

 

 

Have you ever heard of Raynaud’s? Do you suffer from it too? Do you have any tips to help me overcome the cold?

The breast clinic: What to expect

Breast pain is one of those things, you never know what it means.  The only way to know for sure is to get checked out, so when I had been suffering persistent breast pain that’s what I did. I worried, I ignored it, I tried to forget about the appointment and I read loads of stuff online. But the only thing that really helped me was the actual breast clinic appointment itself.

 

I’ve heard loads of awful things about our NHS but it’s always come up trumps for me. That includes during pregnancy and beyond with my SVT. Once again the NHS came to the rescue;  I got an appointment with my GP who checked me over, reassured me and then gave me a referral.  Within four weeks I was at the breast clinic seeing a consultant.

breast clinic breast pain what to expect

What happens at the Breast Clinic?

I arrived pretty much dead on the time that my appointment was scheduled, but there were lots of people in the waiting room. I was then given a form to fill out, checking all of my details, filling in anything missing and giving them my medical history and my family’s.  I had contacted my parents to find out if they knew of any breast problems within the family. I figured that whether there was or wasn’t would probably make a difference in the care I received.  This is probably true as I overheard a nurse asking if a lady could have a mammogram because of her family history.

The appointment

I was eventually called to see a consultant and she asked a few questions about the problems, then checked me over. She gave me a thorough examination of both sides, comparing the two to see what is normal for my body.

After seeing her I was given a gown to cover up and sent to another waiting room for an ultrasound – as I’m only 29 I cannot have a mammogram.  I waited there for around an hour before I was called. Lots of people came and went in that time. Luckily I had my kindle and read Giovanna Fletcher’s new book Always With Love which I got so in to I was gutted when they called my name!

The ultrasound was really quick, I had to lie on my side while they scanned – the doctor explained what he was seeing on the screen; healthy breast tissue, milk ducts, muscle, veins, ribs, my heart (but of course I’d already seen that when I had my echocardiogram)…

After I’d had the ultrasound I was sent back to the main waiting room and then called in to see the consultant to discuss the results.  In total I was at the breast clinic for 2.5 hours.

The results

I got the all clear, there is absolutely nothing untoward in my breast, but it is still sore.  The consultant reaffirmed that breast pain is very common and gave me a leaflet which discusses various reasons for breast pain.  She also offered some suggestions of ways to treat it including Evening Primrose Oil (EPO) and cutting out tea, coffee, chocolate and red wine.  There are a few websites that suggest there is a link between caffeine and breast pain, but as I already drink decaf, eat minimal chocolate and don’t drink red wine I am not going to change my diet. The consultant recommended taking EPO once a day because the suggested dose of 3 times a day made me feel nauseas. If that fails, I may just have to live with it.

I was also granted ‘open access’ to the breast clinic, so that if I see any changes or have any more issues I can call them for an appointment instead of going through my GP.

 

Breast pain and breastfeeding & conceiving

I was reassured that the pain I experienced would have absolutely no impact on breastfeeding in the future.  I was also advised that when we decide to start trying to conceive I should stop taking Evening Primrose Oil.

 

For more information about breast pain see the NHS website

 

Remember, if you notice any changes at all in your breasts or feel unusual amounts of pain, make an appointment with your GP.  Don’t forget to check yourself regularly, there’s a handy guide of what to look/feel for at Coppafeel. There’s also a brilliant self awareness campaign on instagram called Know Your Normal.

What if it doesn’t all go to plan?

This is one of those posts where I’m not sure if I’ll hit publish, but it’s something I feel like I need to write to control my thoughts.

Breast Pain

Recently I’ve been having a health problem – breast pain, it’s been persistent, as in it hasn’t gone away for around 2 months now.  I’ve been to the GP and I now have a referral to go to the breast clinic in just over a week.  I tried not to think about it and took the Evening Primrose Oil that the GP suggested.  There aren’t any lumps, but I have experienced other changes in my breasts, all of which I’m not sure if they are related to stopping breastfeeding after nearly 2 years and losing weight or if there is something more serious.

Either way, sometimes a health issue hits you and you suddenly start to think about the ‘what ifs’.  A few years ago I had recurrent abdominal pain and had to have my ovaries scanned; R and I hadn’t been together long (about a year) but it made us have the conversation about ‘what if’ in relation to kids.  We discussed worst case scenarios and discussed adoption and every other option we could think of.  In the end we settled on ‘we would deal with whatever was thrown at us’.  Luckily there wasn’t anything sinister in the scans and I’m still not sure why I had such awful abdominal pains, but it was something that made us think.

This time around, we have Oliver.  We always said we wanted to have a reasonably big gap between children and then when he proposed we said we would wait until after the wedding.  Oliver is desperate for a baby brother or sister (he’s favouring a brother at the moment and apparently they will have bunk beds) and we have taken for granted the idea that we will have another baby and it will happen when we expect it to.

But what if it doesn’t all go to plan?

The issue with my breast pain has really made me stop and think about all of the assumptions that I made previously;

That I’d have another baby.

That I’d breastfeed again.

That I’d breastfeed until self weaning again.

Then I might have another baby after that and do it all over again.

But What if it doesn’t all go to plan?

What if the problem in my breast is more serious than we hoped?

What if I can’t have any more children?

What if I can never give Oliver that brother or sister that he longs for?

What if I will never be able to breastfeed again?

 

It’s hard being in limbo, it’s the not knowing that makes you think about the worst case scenario.  Almost like a defence mechanism to prepare yourself, just in case.  I don’t have the answers to any of my questions, and yet again it’s one of those things that I will just have to wait and see.  The sheer fact I’ve had these thoughts has changed my perspective on it all though.  I feel even more lucky that Oliver surprised us, because what if we had got to now without any children?  What if I had never got to feel that closeness, that bond and that love.  What if I never knew what it was to be a mother.  What if I never got to prove myself wrong?

 

breast pain-what if it doesnt all go to plan