Hidradenitis Suppurativa Awareness Week 2020

What is Hidradenitis Suppurativa (HS)

HS is a long term, painful term condition that causes abscesses and scarring on the skin.

The exact cause of HS is unknown, but it occurs near hair follicles where there are sweat glands, usually around the groin, bottom, breast, and armpits.

More woman than Men have the condition. It is thought to affect about 1% of the UK population.

Symptoms

Symptoms range from mild to severe. It can cause a mixture of boil-like lumps, blackheads, cysts, scarring and channels in the skin that leak pus.

HS tends to start with a firm pea-sized lump that develops in one place. This can rupture and ooze pus after a dew hours or days, or even disappear.

New lumps will often develop in an area nearby. If these are not controlled with medication, larger lumps may develop and spread. Narrow channels called sinus tracts also form under the skin that break out on the surface and leak pus.

Some lumps may become infected with bacteria, causing secondary infection that will need to be treated with Antibiotics.

What causes hidradenitis suppurativa?

The exact cause of hidradenitis suppurativa isn’t known. It develops when hair follicles in the skin become blocked. Experts think it could be connected to hormones, inherited genes, and immune system problems. Smoking, excess weight and metabolic syndrome also might play a role.

Hidradenitis suppurativa is not caused by an infection or being unclean, and it can’t be spread to other people.

Complications of hidradenitis suppurativa?

Infection – The affected area is susceptible to infection.
Scars and Skin Changes – The wounds may heal but leave rope-like scars or pitted skin.
Restricted movement. Sores and scar tissue may cause limited or painful movement, especially when the disease affects the armpits or thighs.
Obstructed lymph drainage. The most common sites for hidradenitis suppurativa also contain many lymph nodes. Scar tissue can interfere with the lymph drainage system, which may result in swelling in the arms, legs, or genitals.
Social isolation. The location, drainage and odour of the sores can cause embarrassment and reluctance to go out in public, leading to sadness or depression.

Next Blog will cover – Managing your mental health with HS.

Thank you all for reading, Love Amy – MamawithHS x x x

Lockdown 2020

Like alot of us in the world right now, we are on lockdown due to the COVID-19 pandemic.

I have been working from home now for 4 weeks, the 1st week without the Children as they were still in School and Nursery.

Week 1 with the Children was ok, wasnt great but it went better than expected. One Big issue was / still is, is trying to get Charlie to do any school work. With it being week 1 we didnt push him, as it was a masssive change for a 6 year old to contend with. Leaving school, leaving his friends, leaving his teachers, not being able to see him family.

Charlie’s school have been fantastic thoughout all of this, making sure the Children have the support they need and the parents have the tools to support our Children. Some of the parents from Charlie’s class have set up a WhatsApp group and its been a god send to Charlie and me. We chat, send upbeat pictures and memes to each other and we are supporting each and everyone of us though this terrible time.

We are still struggeling to get Charlie into the frame mind to do work at home. I get the feeling he thinks he is on Holiday from School. Each day we are trying new ideas for him, getting him involved in day to day activities, like paring socks, counting and subtracting etc. Helping us in the Garden and learning about the Frogs and tadpoles we currently have. We are trying to think outside the box with his learning.

I have ordered some flashcards to work on with Olivia but over all with her being 2 yeara old im not worried about these few weeks / months with her.

People has said potty train her in the time we have, but she really isnt ready. She is showing no signs at all anymore. We did try a month or so ago but we stopped as she wasnt ready. Olivia isnt 3 untill August so im sure we will master it by then.

What have you been doing to survive lockdown?

Sent me some of your top tips.

My 5 top tips are:

Dont put to much pressure on yourself
Get outside for your daily exercise
If your working from home set yourself some working hours and stick to them.

Adult colouring in books – if you have them, start colouring in.
Remeber this isnt for ever……

Please stay in, only shop for what you need and stay safe.

Thank you to all our Key works keeping this country going.

Stay Safe Love Amy xXxXxXx

Some pictures from our first few weeks of Lockdown.

Depression and Me Part 2

Once I had reduced my medication to the point were I could still function, about 3 months later I was off my medication all together. Life was good, I was enjoying life with Phil and Charlie. We were doing normal family things, trips to the park, seeing family and friends, days out etc.

Then November 2016 I feel pregnant with Olivia and one off my first thoughts was OMG i cant go though all that again.

Once my pregnancy was confirmed by the GP I raised concerns over how it would / could effect my mental health again, to be told that they wouldnt see me untill I was 25 weeks gone.

This made me feel like I wasnt in controll. Constantly thinking what would happen if I started off with issues before I was 25 weeks, would I have to deal with it all on my own again, I didnt think i would be strong enough to do that.

I was able to be put back under my medical team early and things settled down and my anxiety settled as I new things were in place if I needed them.

I had a nurse come out every week from 30 weeks to just sit and chat with me to make sure I was on the right road and was ok. We saw the consultant at 38 weeks and we made the plan that I would start taking my antidepressants the day Olivia was born as a preventative measure. This helped alot, I was able to bond with Olivia eaiser and take the time get use to being a mum to 2 children.

Once our families left us at about 6 days after Olivia was born, we settled in to lofe as a family of 4. Phil had been made redundant while i was expecting Olivia so he was at home for the first few months which was amazing and helped me alot.

I started to do a Cognitive Behavioral Therapy course that my team had suggested I give ago. I attended 3 weeks, and I decided it wasnt for me. It wasn’t helping, I felt a fraud and that I should be there as there were people worse off than me. This wasnt helping me at all. So after a chat with my nurse that was still coming around each week, we decided that I would stop.

Then at 4 months in, Phil got a new job back in Liverpool. So we moved house again, back up to Southport so we could have our families close to us. Miving house with a 3 year old and a 4 month old was hard but worth it.

My medical team had changed but this time was I was getting the help I needed from the team in Liverpool.

After about 18 months I was transferred back to my GP and have been under them since. I am still on my antidepressants and im on a larger dose to deal with life, work, children and also my Hidradenitis suppurativa, but im ok with that.

Life has been tough since Olivia was born, but I managed to make my way through it easier than I did after Charlie. It just goes to show that with the correct help and support life can seem and be so different.

My advise to anyone who is struggling, seems to be in a constant fog please talk about it.

Your GP, charities, family, friends, mental health first aiders at work – anyone. That first contact you have with someone regarding your mental health can change everything.

Olivia Day 1

Depression and Me Part 1

Mad busy weekend this weekend. 28th February we have 2 birthdays to celebrate, My mum and Charlie share a birthday.

6 years ago my long journey of PND started. While I suffered and still do, I am very aware that people suffer a lot more than I do, I still feel that I should still share my story.

Looking back I feel that my struggel started before Charlie was even born. About 4 weeks before Charlies due date, I went for a regular checkup with the midwife. From that appointment I was send for an emergency growth scan as my Bump was to small. This happened 3 times before Charlie was born and each time everything was good. But in the back of my mind I was thinking am i letting him down by not allowing him to grow as he should and what am I doing wrong.

Roll on the day Charlie was born 5hr labour straight forward no issues at all. But then the worry started, we were kept in for 3 days as Charlie wouldn’t feed. I was all ready to breastfeed, but Charlie wasnt showing any signs of wanting to feed. The nurses tried to help and I hand expressed for him but he wasnt intrested. Then on the sunday as we were desperate to get home we tried him on the bottle and that was a struggel but he did it. After 4 midwife appointments 2 GP appointments we finally found out Charlie was tounge tie and need to have it sniped. For the first 7 weeks of his life he had to fight hard to feed. 7 weeks later he was guzzling down formula milk.

During these 7 weeks I had been to see the GP as I wasnt feeling myself, to be told its just baby blues – take this medication for 2 weeks and it will be fine. So thats what I did.

It wasnt untill we moved house to Nottingham that I realized just how bad I was feeling. Lucky my new GP was amazing and got me into the hospital in a mater of days to get a team around to help me.

My team were amazing, nothing was to much for them to help me and Charlie. After a year and a half I was discharged back to the GP and about 6months after this we started to reduce my medication.

TBC in part 2……..

Thanks for reading

Amy

Picture is Charlie Day 1.

Mama with HS

Hello I’m Amy im a 30 years old Mum of two and live in Southport.

I suffer with a chronic illness called Hidradenitis suppurativa and have done for the past 7 years.

I live in Southport with my fiance Phil and Charlie who is 6 years ol (in 5 days) and Olivia who is 2.

I have started this blog to raise awareness around Hidradenitis Suppurativa and how it impacts day to day life, with the Children and working full time.

Thank you for joining me on this journey though the highs and lows of life.

Love Amy x x