TSW through the eyes of a parent (Part 1)

This post is going to be broken up into two parts. My mum (Elaine) looked after me from day one of Topical Steroid Withdrawal. I couldn't have done it without her and she is the only person who has really seen it all.

I think while you are the one experiencing the extreme pain and discomfort, your loved one can see what is happening from a unique perspective so I thought it might be interesting to get her view on this as I knew she kept a diary of the first month. I have only just read it through for the first time and I was shocked it was that bad - and this was before things really went downhill. The second part of this post will be from her perspective now, over 28 months in, which I will publish in a couple of days.

I hope you enjoy (for want of a better word) this post.

Sending you all BIG hugs and remember, it DOES get better.
Cara xxx

Me with my amazing mum. 
*Taken just over two weeks before I started TSW*

*Mum's diary entries:

Thursday 6 June 2013
On 6 June 2013, my 25-year-old daughter decided to stop using topical steroid cream. I think I set the ball rolling and at this stage I don’t know how I feel about that. On the morning of 6 June, I could see the veins through her skin on the lower half and side of her face. I had mentioned that she should think about cutting down the amount of steroid cream she was using in the past, but that morning I had to say something about her skin thinning because I was so worried. She said she was ok but later that day she decided to look up addicted to topical steroids on the internet and said out of the blue that she was never using them again. I was surprised and glad but thought she would do it gradually even though I knew she had tried this way before and her skin flared up as soon as she stopped. I now know that it is not eczema that is flaring but the reaction of the skin without topical steroids. She said she was going ‘cold turkey’ and said it was the only way because any amount of steroid use just keeps the problem going. She was very determined and I said I would help her in any way I could.

Friday 7 to Wednesday 19 June 2013 
Over the next twelve days her lips became swollen and slightly open underneath and her skin was dry. She had patches appear on her arms where steroid cream had not been applied. Strangely the patches of ‘eczema’ on her wrist and knuckles didn’t get too much worse at that time. Her skin didn’t look too bad and she felt ok so did four shifts from 13-16 June at work and stayed with a friend for four nights because we live a long way from her work.

Thursday 20 June 2013 
It all seemed manageable until the early hours of Thursday 20 June when she woke up feeling extremely uncomfortable. I looked for something to fan her with and found a large Ordnance Survey book and that helped to a degree, but then I remembered a glass bottle of water in the fridge and she rolled it over her skin and that really helped.

Friday 21 June 2013 
Early evening on Friday we decided to go for a walk and on the way, met a neighbour we hadn’t seen before who introduced himself. He had a dog and we both stroked it and didn’t really think about it, but she was very itchy during the night. The next morning, her skin was very red and her eyes were puffy. She suggested it could have been stroking the dog that triggered something, but we will never know. I felt very low because I was frightened at the severity of the reaction and I didn’t know if she was doing the right thing. I even suggested that she use a little steroid cream to dampen it all down because she looked so uncomfortable. She said no because the way she was reacting made her realise how dangerous steroid cream is. I bought an electric fan for her with four speed settings and that has proved to be invaluable and the best relief for her so far.

Saturday 22 and Sunday 23 June 2013
A black weekend from my point of view because I was so worried about her but tried not to show it because she was dealing with so much. I decided to read online blogs to find out as much as I could and I am so grateful that people shared their stories because I could see that what she was suffering was a common reaction to coming off topical steroids but that you could get through it. I told her that I was behind her one hundred per cent and that I would help in any way possible. I told her not to think about work and to concentrate on looking after herself.

Monday 24 to Thursday 27 June 2013
She had shifts at work booked for 1 and 2 July and was determined to go. I was in the chemist and noticed some hand-held fans for only £1 each and bought 4 for her. To get to work is a two-hour journey on the bus and tube and I thought they would help keep her comfortable. However, from Monday to Thursday she was definitely worse and her skin was very red on her face and neck with patches over her arms and hands and her eyes were puffier. As the week progressed, I told her she shouldn’t think about work, but she was still determined to go.

Friday 28 June 2013
She woke up during the night very itchy and uncomfortable and it took a long time for her to go back to sleep.

Saturday 29 June 2013
Friday night we went to bed just after midnight and she woke around 2am extremely uncomfortable and tried not to wake me but I woke up after 30 or so minutes of her being awake. I am usually a very light sleeper so she must have tried to be really quiet. I told her to wake me from now on so she is not alone at night.
She managed to get to sleep around 4am and felt awful when she woke up but gradually felt a bit better and asked if we could go to the nearest shopping centre because she was getting ‘cabin fever’ and also wanted to see if she could manage to get to work. Plus, she needed new cotton pyjamas, so we decided to go but it is almost an hour on the bus from where we live. She felt ok on the journey there, but after a very short time at the shops, felt exhausted and her skin was flaring. We got the pyjamas and came back home. At this point, she knew work was out of the question and decided to let them know that she was taking July off but would keep them up to date. Fortunately, it is not a problem with her job because it is not permanent and they can get other people to do the shifts.

Monday 1 July
The worst day so far. She went to bed on Sunday around 11pm and managed to get to sleep after half an hour or so. She slept through the night until 10am but said as she came through the door ‘don’t get a shock’. She had an extremely puffy face and her skin must have been weeping through the night on her eyelids, face and badly around her mouth. She couldn’t move (or close) her mouth and her eyes were slits. The skin on her face and neck was extremely red and dry. I suggested calling the doctor and she agreed. Unfortunately, the only appointment they could offer was 3.50pm with a doctor my daughter had seen once before when her skin had flared and the 1% hydrocortisone cream she was using didn’t have any effect. At that time the doctor was very offhand and suggested a stronger steroid cream, so my daughter said no to the appointment.
She decided to take an antihistamine tablet and I bathed her eyelids and around her mouth with a cotton pad soaked in warm water and she was able to eat her breakfast, but it took a long time. I keep two cotton pads soaked in water in a covered dish in the fridge for her eyes and replace with new when she uses them. She put the pads on her eyes and had a warm bath. It is 2pm and she feels a bit better and the swelling has gone down a bit but she feels wiped out. 
I decided to do this diary today because it is so difficult to remember exactly when things happen and hopefully it will help other people. Reading this back, it sounds like doom and gloom, but we have occasionally managed to find humour in the situation and at times it has been difficult because she tries not to laugh and crack her mouth where the skin is tight.