Stressed, Depressed & Compressed

Can I be a Suicide Girls Hopeful now?

Compared to my post at the end of January, the optimism and excitement I had at the time has gradually dispersed. I’ve no energy lately and I am tired, which is weird considering the days are getting longer and I’m eating a bit better. I went through a couple of days where I actually felt good about my body for once, so much so that I made a post about it on Instagram (that’s a big deal for me!), but alas, that has disappeared into the abyss.

Money is a very big strain at the moment – maybe that’s mentally tiring me out? Roll on 28th Feb; payday and the day I fly to Poland.

My new set of compression stockings came in the post the other day, and today is my first day wearing them. They are a lot longer than my petite ones I initially got given, and they have a tighter compression. The latter is a good thing, although I think it could be a bit a stronger by my foot. Kinda wish they were toe socks, despite how ugly they are.

The fact that they are longer is irritating. I have to pull them way up to the very top of my thigh for them to fit and compress properly. So maybe the petite ones are right for me, but I’m going to have to wait at least 6 months to go back and tell them that, when I have my review. I suppose it’s not going to be spot on the first time round, and I need to learn what works for me…

I took these new compression stockings to work with me to put on in the disabled loo, as I was in a rush this morning. As I was pulling them up my leg it was a lot more difficult than before, and was so frustrating and demoralising. It just made me feel really crap and fat and ashamed. And then they started physically irritating the inside of my thigh.

On top of that, I’ve not been doing my LMD. I know. Not good. But there are not enough hours in the day. I’d like to move to Mars please, and get an extra 37 minutes, that way I could get a couple more things done at least.

(Just kidding, I’d probably spend the extra minutes snuggling with my spiky son).

Cydonia, where those lucky martians get 37 minutes more a day than I do.

Right Leg In, Left Leg Out

They’re actually rather flattering..!

Last week I got my first pair of compression stockings from the hospital, and I have been wearing them on and off since. They are actually a slightly shorter size than needed (which is amusing as I’m already petite), and so I’m expecting another pair in the post in due course.

The actual meeting at the hospital on the day was stressful; I hadn’t shaved my legs (no big deal, but I’d rather not be reminded of my cactus prickles), I was convinced I was sat in the wrong waiting area, and I forgot my purse and wasn’t able to pay for my parking. Thankfully the man at the barrier said he’d let me through for free “just this once”.

I sat in the same waiting area as I did for my first lymphedema appointment, however this time there were a lot more patients waiting in there, all of them looking very unwell and more than likely battling cancer, as the clinic is part of oncology. I felt very awkward and out of place; a young healthy looking woman sat amongst significantly older patients who were hooked up to machines. Felt like I was taking the piss.

Wearing the stockings has been fine and I’m enjoying them, however I am looking forward to receiving my other pair in the post, as these aren’t compressing my foot enough. It’s just like wearing thick tights. But I suppose these ones I currently have will serve well for nights out/getting dressed up. Doing my PT session in just the one stocking was amusing as I looked like a really shit peg legged pirate. It didn’t stop my foot from swelling while exercising unfortunately, but I think this is down to the compression not being strong enough.

Anyway, that’s everything for the moment. I keep forgetting to do my lymphatic massage, and I’m still going to the podiatrist/chiropodist/whatever they’re called nowadays for my treatment on the bottom of my foot. Life has been weird the past 10 days or so because I wasn’t taking my medication properly, but I’m all sorted now. I had my 24th birthday and have got a new tattoo. Adios.

Everything’s Coming Up Milhouse

Well, sort of. For now. I still have a swollen foot. Ha!

I’m yet to receive anything in the post telling me when I’m due to go for my first fitting of my compression. However, I thought it might be nice for me to reflect on the good things that have happened/are coming up in the near future:

  • I got a promotion at work. I’m no longer a Personal Assistant, but a Business Support Assistant.
  • I’m getting a facial and back massage tonight.
  • I went to the podiatrist again today.
  • I’m getting a tattoo on Saturday.
  • I’m attending a creative/artist meet up on Sunday.
  • It’s my 24th birthday next week.
  • I’m going for afternoon tea with my Mum next week too.
  • I’ve purchased my first stall at a comic con to sell my art in June.

I have also been doing my SLD on a night before I go to bed. I’ve not really seen much of an impact, but to be fair I’ve only been doing it for a few days, and that’s without a compression aid. My foot was really bad today at the podiatrists…

Lymphedema of the foot, AKA, your toes now look like Wotsits

Until I get my letter from the hospital about my compression, I’ve nothing to mention at the moment. The salicylic acid is burning my foot this time round. Other than that, I’m just in lymphedema limbo really.

Yeah But, Jade, What Is Lymphedema?

If you know me in real life, you’ll know that since my official diagnosis I have been doing a lot of research and have been trying to reach out to other young ‘lymphies’ around the world. It has taken up my life for the time being. If I’m going to be living with this condition forever, I need to know as much as possible.

More people suffer from lymphedema and lymphatic diseases in the United States, than suffer from Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson’s disease, and AIDS — combined.

Lymphatic Education & Research Network

But one thing I have found is that no-one knows what lymphedema (or lymphoedema – different spelling, same thing) is. Most people I’ve spoke to about it in my life had never heard of it before, and additionally knew very little about the lymphatic system. So I will try to explain what I have learnt so far, in my own words…

The lymphatic system:
Part of the immune system. It is the network of vessels in the body, through which lymph fluid drains from the tissues, into the blood. 
Your lymphatic system sits between your veins and arteries. The lymph fluid passes through lymph nodes, which are connected by a network of lymph vessels.

The lymphatic system does not have a pump behind it, like the circulatory system does (I’m talking about the heart!). Therefore it relies on you to move about/breathe/exist to keep the lymph fluid flowing through your network of lymph vessels, that then connect to lymph nodes.

The nodes are essentially a filter, capturing anything harmful that the body doesn’t need. According to the Macmillan website: ‘the lymph nodes contain white blood cells (lymphocytes), which attack and break down bacteria, viruses, damaged cells or cancer cells’.

The harmful stuff/waste products/destroyed bacteria caught in the nodes are then carried in the lymph fluid, back into the bloodstream, where they are removed from the body with other body waste.

So how does lymphedema happen?

Lymphedema can happen for a few reasons. I will break it down into the two types – primary and secondary:

Primary: caused by genetics, specifically mutations in the genes responsible for the development of the lymphatic system. These mutations cause the nodes and vessels to not develop properly, or not work as they should. Primary lymphedema often runs in families (but in my case, no-one in my family has lymphedema).

Secondary: occurs in people who had a normal lymphatic system, which has then become damaged for one of a few reasons, e.g. cancer surgery (where parts of the lymph system have had to be removed), radiotherapy, infections (such as cellulitis), inflammation, venous diseases, obesity, trauma/injury, being immobile.

Initially in 2015 I started with moderate edema in my foot, and since 2016 it has been mild.

Unfortunately for me, I have been diagnosed with primary lymphedema, as there was no trauma or injury to me at the time I flared up initially. My lymphatic system was fine for 20 years, and then it seems the part of the network on my right foot started to struggle.

At the moment, lymphedema is an incurable – but manageable – chronic condition which is progressive, and I’m sure over time medication and science will advance to further help those living with it. Currently, sufferers are advised to exercise, use compression aids, moisturise daily and do manual lymphatic drainage massages to improve their symptoms. It’s not as simple as just ‘draining’ your body parts of the fluid, or using diuretics.

Sexy, right?

I hope this article has shed some insight into what exactly lymphedema is. I will be doing a post in the future about how having lymphedema affects me daily. If I’ve missed anything, please let me know in the comments below!

Shoe Stuffing

Lymphedema is not an attractive ailment. I suppose most ailments aren’t attractive, but this one is visible and in some worse cases, blindingly obvious. I am lucky that – at the moment – my swelling is classed as mild. Although over time it may develop elsewhere, who knows.

As mentioned in my previous post, I have a general dislike (ok, maybe hatred) for feet. The fact that I have to really squeeze my foot into my shoes everyday does not help with this. It is one of the things which gets me down the most about lymphedema. It’s embarrassing. It’s ugly. Boyfriend wants to be nice and rub my feet for me after a long day? No thanks. He doesn’t care, but I do.

(I think I am going to have to get over my hatred for feet pretty quickly seeing as I have now had my diagnosis, and will be looking after my tootsies a bit more).

I’ve had to give up or sell so many of my shoes that I’ve bought, and found I can’t actually fit into them. Vans slip ons, TUK Mary Jane’s, Demonia boots, flatform sandals. I frigging love shoes, but now my choices are limited. I have to stick with laces, can’t wear heels, and can’t wear shoes with straps/buckles. This is particularly difficult at weddings, as I always want to wear heels due to my lack of height, but I would have to stuff my foot in and be uncomfortable for hours (exactly like Kim K’s feet in this pic).

Instead, I opt for Doc Martens, Vans lace ups, or dolly pumps, as they are adjustable across the top of my foot/non restricting. I shouldn’t complain really as I’m still able to wear some nice things, but as they say, you don’t know what you’ve got until it’s gone. I don’t think I’ll ever be able to wear a pair of Bordello heels without having to use a compression stocking 😦

Do you have any hacks or recommendations for shoes? Let me know in the comments.

I Hate Feet

What the title says, basically. I hate feet. No-one likes feet, surely? Well, I mean I know some people do. And another group of people really do. Alas I am on the opposite end of the scale.

It’s ironic really, seeing as I’ve had to get my feet out multiple times for them to be examined. I’m really embarrassed of them, and apologise to the person who’s about to check me over every time. I don’t doubt they’ve seen worse before. Just look at Google images for example
Still, I apologise and explain I am embarrassed as a kind of pre-warning, and that reassurance to say my small size 4 feet aren’t the stuff of nightmares is very welcome.

I think if I liked my own feet, I wouldn’t ‘hate’ them in general and would probably be nonchalant towards others trotters too. Unless they are the stuff of nightmares (see: Google images).

It’s not only the lymphedema which makes me self conscious. It’s the fact that I’ve had quite a collection of… Uh… Warts… On the same side as the swelling since I was about 10. You won’t catch me going swimming or in public showers like at the gym. Noooo way. Self treatment never worked, so today I visited a podiatrist. And it was lovely! Please, if you’ve never been to one, go.

I was welcomed with a lovely warm, relaxing foot soak while filling out my details on a form, and then we got to it. I explained my issue to my podiatrist, and also tipped her off about my lymphedema. She was also surprised that it was that. She said to me, “I would have never thought that your swelling is lymphedema. You’re very young”.

She explained that my immune system needs a bit of a kick start to help remove the pesky invaders on my foot, which meant she had to use a blade on them to remove any build up and also to make a small bleed, so that my body can think “oh no, we must repair this”. I was a bit weary at first, especially after learning yesterday that I need to be extremely careful of any cuts of nicks on my legs. But to be honest, in the 4-ish years I’ve had a swollen foot, I’ve never had cellulitis and I’ve even had both of my calves tattooed. So as long as I keep it clean and let it heal, I think I should be fine.

Working from home

The next step was to add salicylic acid to the main problem area. This will basically burn my foot in an attempt to shock it in to fighting off the virus. I will need to have this done weekly for the next 3-6 weeks depending on how well it works.

So my foot’s all wrapped up for now! When getting a shower I need to keep it dry, and keep the acid on as long as I can until next Tuesday. It doesn’t burn yet…

My First Post

Hello. I actually already wrote this post, but WordPress decided to shit itself and remove my draft, and replace it with a blank page! Yay!

The purpose of this blog is to document my journey through managing my primary lymphedema/lymphoedema – however you fancy spelling it. My symptoms started in March/April 2015, when I was 20. I’m now a few weeks shy of being 24. I’ve no history of lymphedema in my family, my body is in good health, no thyroid issues etc. I literally just woke up one day with a stiffness in my foot, and after a couple of weeks of stretching and massaging, it didn’t go away and got worse.

For almost 4 years I’ve been passed from pillar to post, because professionals 1) didn’t want to or couldn’t help me, or 2) said I just need to live with it. Shout out to my GP who said the latter to me – gold star to you. /s

Here’s the journey I’ve been on so far, in no particular order:-

  • Prescribed anti-inflammatories and RICE (rest, ice, compression and elevation – still good advice to be honest)
  • A visit to the musculoskeletal specialist
  • And the vascular specialist
  • Oh and the orthopaedic specialist
  • x2 dermatology consultants
  • x2 blood tests
  • x4 ultrasounds
  • x3 physiotherapy sessions
  • x2 x-rays
  • x1 MRI scan
  • x1 visit to A&E
  • x1 doppler test

Today was a breakthrough though. I had my first visit to the lymphedema clinic! I got measured up for a super sexy thigh high compression stocking 😉 which I’ll be getting in the next few weeks. I also opted to get booked in for a lymphoscintigraph. Not that this will change my diagnosis or anything, but more so I can put a line under this uncertainty I’ve had for years about my foot, and prove to the Doctor that there is actually something wrong. It was really nice to speak to someone who understood the issues I’ve faced with my foot, and for someone to take me seriously.
The practitioner was still bamboozled at my case though; the fact that I’m 23 and nothing is ‘wrong’ with me physically elsewhere.

I’m sad it’s taken so long for me to get to this point. I suffer from depression, and this has been an added factor over the years. I also won’t be able to do simple things like use a razor to shave either of my legs in case of cellulitis, or get any leg tattoos (whoops…). I do certainly have my down days over my foot, but I need to remind myself this is now a step in the right direction.

The next steps are to buy some Aveeno to start my nightly SLD (simple lymphatic drainage) routine, get booked in for my compression fitting, and also get booked in for my lymphoscintigraph. I’m not looking forward to the latter as I’ve been told it’s not very nice, but pain is only temporary… Until next time!