Wednesday 13 March 2019

Chronic Illness and Hair Loss

[Image Description: Photo 1: A picture of Amy with straight orange shoulder length hair
                                 Photo 2: A picture of the back of Amy's straight orange shoulder length hair
                                 Photo 3: A picture of the bald patch on the back of Amy's straight orange shoulder length hair]

For around 5 years, on and off, I have experienced patches of Alopecia Areata, aka hair loss.

Blood tests have shown different results, B12 deficiency, vitamin D deficiency, Folate deficiency etc but even when my levels have gone back to normal (with the help of a course of tablets) I have still had the hair loss. The only thing doctors seem to have put it down to is stress.

Things have been particularly stressful recently (see my latest two posts) but I do try to take time to relax as much as I can.

It's only since I've had chronic illnesses that I have experienced hair loss, so I wonder whether this is connected. My immune system must be compromised and most of the illnesses I have are systemic; with symptoms affecting various parts of my body.

I'm quite vain about my hair. I enjoy getting it styled and coloured with bright dyes, but I also look after it well; washing every 2 or 3 days with shampoo and conditioner (the kinds that keep it very moisturised, but also keep the colour in), moisturising spray before using a detangling brush, then heat spray before styling. I make sure I have days where I let my hair dry naturally, without a hairdryer.

The first time I had Alopecia, the patch was small but right on the top of my head, so I had to style my hair a certain way to hide it. I felt mortified when someone noticed the patch! I struggle with my own identity (thanks, BPD), but I see my hair as part of it, so to lose it would be like losing a part of my identity! Since then, it has been happening on and off, every few months to a year.

As for treatment, most things don't do much but I've found that a prescribed product called Dermovate at least speeds up the hair growth. I won't say it'll definitely work for you, but if you experience patchy Alopecia, I recommend going to the doctor, having whatever blood tests they send you for, and asking if you could try Dermovate. It is a steroid treatment, and thins the skin so can only be used for a couple of weeks at a time, but compared to waiting for hair to grow back without treatment, this product has definitely sped up the hair growth for me. If you do try it, I hope so much that it works for you too.

Do you experience/ Have you experienced patchy hair loss (aka Alopecia Areata)? Have you found out the cause? Are there any other treatments you would recommend? Please comment below!


What is Alopecia Areata and How do I Treat it?:

Vitamin B12 or folate deficiency Anemia:

Vitamin D deficiency:

What is Folic Acid deficiency Anemia?:

Dermovate Ointment:

Sunday 10 March 2019

Updates, and some worrying family news

Since my last post quite a few things have happened.


My nan has now been temporarily placed in a nursing home. It's further away from family than she'd like but she at least accepted this was the best place for her, at least while she's rehabilitating. Her family (including my dad and I) are taking turns visiting her, so she only has 2 or 3 days where she doesn't see anyone other than the nursing home staff.

Her suspected Dementia is definitely getting worse and she is now doubly incontinent. As for her mobility, on a good day she can stand with the help of a machine (a Rotunda I think?) but she generally needs hoists to get her out of bed and into a chair.

Her nursing home placement was originally only supposed to be 4 weeks, with the hopes that she would be rehabilitated well enough to go back to her assisted living flat. Staff were under the impression (due to Nan convincing them) that she would receive round the clock care in her flat, and carers would tend to her every need. After speaking to some of the family, however, they now know that this is not the case. Once the 4 weeks have passed, Nan will have a thorough assessment of her physical needs, mental health and capacity. Hopefully Dad and I will be able to attend for any other information needed.

To say she is settled in this home would be quite an overstatement. Staff have told us that she is complaining about everything and accusing them of taking much longer to see to her than they actually are. We spoke to one of the nurses based in the home, who has got to know Nan fairly well, and she definitely agrees she has Dementia. She assured us they will assess her for this at the end of the placement, and along with any other concerns raised, we will discuss where she will go next.

Last time I saw Nan, she seemed to accept that she now has too many needs for her assisted living home. She reluctantly accepts she has to stay in this nursing home for now but she wants to go into one much nearer the family when she comes to the end of her placement here.

I feel so conflicted about Nan to be honest. She really annoys me, and I get embarrassed about the way she speaks to staff, but I have to remember that a lot of her behaviour etc is down to the Dementia and for the most part, she can't really help it. I love her to bits though and worry about her constantly. The main things I want are for her to be happy and safe. She's safe at least, but I wish something could help her feel happy. My family and I do our best to ensure her room is as homely as possible but it's impossible to get it just right, and unless it is exactly the same as her old flat, she isn't happy.


A few weeks ago, one of my cousins went to the Philippines to do work experience for her medical degree. She'd had all the vaccinations needed, but unfortunately a mosquito bite infected her with Dengue Fever . She was very poorly already and was unable to tell the hospital staff of any other things that had happened.

A few days after she was admitted into the hospital, she became critically ill, and doctors discovered multiple jellyfish stings on her body. She'd been swimming in the sea, and luckily was wearing a bathing suit instead of a bikini, so some of the stings didn't quite get through her skin. Regardless, she is now in intensive care and has been intubated. This is because the neuro-toxins from the jellyfish stings are severely affecting her ability to breathe. She is also experiencing paralysis in her legs.

There have been points where doctors have been unsure as to whether she will survive. Apparently the stings had been in her for a week before being discovered, and the Dengue Fever masked the symptoms of the stings.

We are all so so worried about her, but glad that friends of her parents are keeping us updated about her condition. My aunt and uncle are flying over to the Philippines, so hopefully there will be more updates soon.

My Mental Health (TW: Self Harm)

This year, I planned to do everything I could to improve my mental health. I was so fed up of feeling so stressed, anxious, agitated, demotivated, and low. I was also really frustrated about how easily triggered I am by any mention or discussion of abortion. It's been 10 years since I had my traumatic one and I've never really faced it. I still have a few weeks left on the waiting list for counselling with the Primary Care team, but I feel like I need to start therapy or at least talk to someone ASAP. Once my counselling for this has finished, I plan to get in touch with Women's Aid, about the abusive relationship I was in when at university.

At the moment, I feel like I cannot concentrate on much at all, let alone myself. I am going through the motions, trying to keep as busy as possible, but suffering physically because of it. My head is full of thoughts again, and to be honest I am self harming every day again. I feel quite sore because of it, but I get such urges to do it, I can't resist. When I'm not doing it, I'm thinking about it and it feels like the only thing I can control right now.

As well as this, I can't stop thinking about my Nan and cousin. Is Nan having a good day or bad day? Have the nursing home staff been tending to her needs quickly? How is Nan treating them? What happens if she becomes too verbally aggressive? Will she be assessed properly? Will Dad and I be able to attend the assessment so the social worker etc can get our experiences and views of her behaviour? These are just some of the worries I have about Nan. As for my cousin, my main terrifying thoughts are whether she is still alive, whether she is unconscious because she's so poorly, or because the doctor has put her under anaesthetic. My cousin and I aren't very close, but I still love her and the thought of losing her is too much to bear.

My Physical Health

As I said above, I am trying to keep busy to distract myself from my thoughts, but this is affecting my physical health. I am very dizzy and feeling faint, and having times where I almost fall over or faint.
Alongside this, I've been having some nausea, worse aches and pains, very bad joint stiffness, and I'm extremely tired and wobbly on my feet. I'm not sure how I'd cope outside without my walking stick. I have my ENT follow up next month, where I will be undergoing Vestibular tests . I also have an appointment with a Cardiologist next month, where I intend to ask about being assessed for POTS . I really hope both specialists will thoroughly assess me and be able to come up with a diagnosis on that day. I will make notes, as usual, of my symptoms, what makes them worse/better, when symptoms arise etc. In the meantime, all I can do is make sure I sit whenever possible, and lie down when I need to (which seems to be most of the day!)

So this is what's been happening with me recently! I will write another post when I know more, and my main posts will be about my appointments next month.

Have any of my readers experienced Vestibular tests? I would love to know what happens and if you get a diagnosis on that day. Also with Cardiology, do they do any tests (as well as an ECG) to thoroughly assess your symptoms?

If you can advise, that'd be great! In the meantime, take care everyone, and thank you so much for reading xxx