Kind of… Since my last post nothing has happened lymphoedema wise, except I rang the professor who referred me for my scan to say I’ve not heard anything about it.
Did I even post about it here? God knows…
Apparently he is going to check it out and write me a letter. But his assistant told me that about 2 weeks ago now. My condition hasn’t got any worse, or any better. I don’t massage any more and I barely wear my compressions now, which I know is bad. My left foot – which is not my lymphie foot – started swelling due to the amount of stress I’ve been under, but it looks like that has thankfully subsided.
Life has been interesting. Probably the wrong word to be honest; it has been shite. The few good things have been that I got a new job after my redundancy and it’s going well, my friends and family are still supporting me and giving me their love, and I am still carrying on with my art and conventions. The last bit took a bit of a hit though, as I had no motivation or inspiration to create for a while.
I’ve gone through 3 mental breakdowns and 1 day of disassociation, the death of my pet, a sprained ankle, and other health problems (which are still ongoing – yay for being numb in my extremities), to name a few of my hurdles. I’m definitely not out of the woods yet, but things seem a little easier at the moment. No doubt knowing my luck it’s a clever ruse.
Sorry for not posting when I said I would. Life is a bit hectic at the moment due to looking for work, however, I’ve managed to record an 8 minute update on what has been going on in lymphie-land since my last post. Take a look!
I’m not as mortified as I was at the time the receptionist told me I had missed it by over a week, but I’m still pretty disappointed in myself. Anyone who knows me will say I am very time orientated. I have not long since learned that time is one of my biggest anxieties. So when I found out that I had wasted time and money from the NHS, and also for myself, I felt very sick.
So now I have to be re-referred by the Professor, however his assistant is away for a few days. It’ll be another week before I hear from her, and then it’ll be another long wait for the next appointment. My brain has been turned to mush this past month or so; things started going downhill after my first trader table at the comic con. I don’t know why, I don’t think there’s a particular reason, other than work is a bit difficult at the moment. Maybe Mercury is in retrograde? Maybe it’s the recent solar winds? Insert thinking emoji here…
Speaking of weather, albeit Earth weather rather than Space, the high pressure here and humidity and storms has been giving my foot a hard time. My ankle bones ache, and feel like I need to crack them all the time to release some pressure. Unfortunately they never crack enough, so I just kinda feel like I’ve a build up of bubbles stuck in my ankle. It’s so frustrating and uncomfortable!
I’ve not been keeping up with my MLD, I’ve not been to see the therapist because I cannot afford it, and I haven’t been wearing compression or KT tape. I’m starting to wonder, what’s the point any more? The only thing that made a difference was the therapist’s oscillation therapy on me, paired with KT tape, and that’s not something I can afford monthly, never mind every two weeks which is what I’d prefer.
Anyway this was just a bit of a rant post about my own stupidity. Here are three things I am grateful for to finish off:
Spending the weekend with some amazing people, who make me feel welcome and loved and have a sense of worth.
Being a woman.
Still having an income even if work is difficult at the moment.
I wanted to write about this sooner, but I have been doing a lot of preparation for my first ever art stall at a local comic con, so haven’t had the mental capacity!
Last week I had my second appointment with my lymphoedema therapist, and she showed me a couple of new things. The first being deep oscillation therapy, which instantly made me think about oscillating fans… Obviously not what it was going to be! It was a proper ball ache getting there and back though. An hour each way, and my appointment with her is only an hour long!
Anyway, I was blown away by the deep oscillation therapy. It was so cool! She hooked us both up to a Hyvamat machine to make a circuit, put on some latex gloves, and did a lymphatic massage on me. The machine sends static pulses through her gloves onto my skin, and the vibrations can penetrate up to 8cm under the skin!! After the massage was over, I could see a difference in my leg, and definitely across the top of my foot. I could almost see between my toes properly! Alas, this probably only lasted about a day, but it was a nice thing to see.
The second thing my therapist showed me was kinesiology taping (aka KT taping). For the other lymphies out there, that is the fancy tape you might have seen other people wearing on their limbs. It’s often used as a sports injury remedy, applying pressure to the area that’s being taped and gives it support. Whereas in lymphoedema, it is used differently…
Use is made of the elasticity of the tape in relation to that of the skin, as a result of which the tape has a sort of lifting effect on the upper layer of skin, the epidermis. This instantly relieves pressure, enabling the blood circulation and lymph drainage to recover. The pressure on pain receptors decreases and the pain perceived decreases immediately. Various effects can be achieved by using different taping techniques.
The Lymph Clinic, Cork, Ireland
This really did help me after the session, and I even wore it to a wedding a few days after she put it on (that was something I was really nervous about, but I’m glad I did wear it). As soon as I took it off, I saw a difference in my leg and it felt heavy and looked puffy again. I bought some KT tape from Sports Direct but it just didn’t have the same effect. I need to get some better tape and practise more.
On another note, I’m pretty pissed off with my health benefit scheme I’m signed up to through my work. I can claim back up to £200 worth of physiotherapy treatments this year, however when I sent my receipt off for my first session, they wrote back to me saying that they aren’t able to reimburse me. This is because my extremely qualified therapist (one that the Hospital lymphoedema clinic refer people to!) is not part of a specific health professional council. She is registered by MLD UK however, but they are discounting this. So I am in the process of writing a letter back to the health benefit scheme, but I’m not feeling hopeful. My next move will be to speak to the lymphoedema clinic at the hospital, where I’ll be attending another appointment in July. I’ll ask if they can fund this treatment for me as I am a broke ass bitch who is gonna have to fork out a lot of money over the next 60-70 years for this condition.
Got my lymphatic imaging thing in the next few weeks, so I’ll update about that, and over the next week I’m thinking of posting some mini comics about lymphoedema. See you then 🙂
As soon as I was shown this video, I related to it on some next level, hahaha.
I don’t wear any kind of special shoes to accommodate my lymphie foot, for the reason that it’s not bad enough to need them, and also I don’t want to wear unfashionable shoes. Sorry to anyone who actually wears specialist shoes..! You do you. Don’t listen to me, your health is more important obviously.
But yeah. This used to be me when I first started with lymphoedema undiagnosed. I wore Vans slip ons and I would do this every. Damn. Time… ANNOYING. So now I opt for lace up shoes/trainers, or simply just wear dolly pumps, flip flops, or go barefoot.
So I tried to claim back my first MLD session through my health payment plan I put into monthly. But because the practitioner isn’t ‘The Health and Care Professions Council (HCPC)’ verified, I can’t get my treatments reimbursed. ERGHHHHHH. I am meeting with her tomorrow for my second session, so will query it with her then.
I haven’t done as much massage as I should have myself between my last appointment and now, but I think I have seen a small difference in myself. Maybe not physically, but the feeling and knowing that the lymph fluid was moving around more (especially after the session) was somewhat noticeable. My practitioner did say it might take 2 to 3 goes to see more of a change, so fingers crossed.
One of my best friends shared a podcast with me earlier today, and it rang very true to me; Doctors shrugging off conditions, not having the correct knowledge, thinking you’re making your ailments up. I’ll embed it below – good to listen to while working or doing something where you just want some background noise. I’ve never really listened to podcasts, other than on a couple of occasions where I’ve listened to the Ricky Gervais Show, and Coffee Break Spanish last year while I was taking regular lessons (I really want to get back into Spanish!). Anyway I’ve gone off on a tangent… A coffee fuelled tangent…
In other news, I successfully managed to go to my local cosplay convention WITHOUT my compression garment (it didn’t go with my cosplay…) and my foot was fine. I was even wearing small heeled tea party shoes! I’m not sure whether it was down to my foot being less swollen, or the shoes being more accommodating, or maybe a bit of both. But I’m classing it as a lymphie success!
Finally, I got a letter in the post confirming my lymphoscintigram appointment! 20th June. So expect a blog post around then telling you about what the process was like and the outcome.
Hi everyone. I am going to start a series of posts focussing on the kind of things us Lymphies come across daily, that anyone who doesn’t have lymphedema would understand! These will be a mixture of tedious, annoying things, and hopefully some amusing and lighthearted things. You ever seen those #JustGirlyThings posts which are ridiculously OTT? Similar to that. But a bit more serious of course!
The aim of the posts is to be tongue in cheek, and be able to laugh together and see the brighter side of the condition (if there is one..?!). Lymphedema definitely does get me down a lot, so I’m hoping this will help me, not just others who happen to come across my blog.
I am absolutely open to suggestions and submissions for this by the way! I’d love to hear from others about their little tidbits when it comes to managing this condition. You never know, you might make someone feel better and like they’re not the only person in the world who does whatever it is they do. Or you might help someone out with an idea they hadn’t thought of before. We are all in this together peeps!
Drop a comment below or get in touch with me via the contact tab above. I would love to credit anyone for their submissions, and if they have a story to tell that goes with it 🙂
Today I visited a lovely lady in Shipley, West Yorkshire, for a manual lymphatic drainage session. For those who don’t know what MLD is, it is where the affected body parts are very gently brushed/manipulated in order to get the lymph fluid and capillaries active, so that drainage can be promoted. The session was really useful – I was taught how to properly do this on myself at home (unlike what the nurses at the clinic told me), explained how to properly bandage myself, and why the use of kinesiology tape can be beneficial to patients. It was also nice and relaxing!
The session lasted about 75 minutes. It was a 45 minute drive there and back, and my first session cost me £48, which I will hopefully have reimbursed through my medical benefit I’m part of through work. It was recommended I come back for another 2 to 3 sessions all relatively close to one and other to help properly kick start my lymph system in my leg.
I was told not to expect immediate results from todays session, which I wouldn’t any way. I don’t want to get my hopes up. That’s something which I used to do when I first started with this condition – oh it’s just temporary, it’ll go away soon, it’s just swelling because of X Y Z – and I let myself down so many times over the years. A few things she did say to expect, were:
Going for a wee a lot. This is down to lymph fluid moving > going into my blood > toxins being removed by urinating.
Potentially kick starting my period. Increased lymph flow = increased blood flow and volume. I have been spotting since my session earlier!
Going for a wee a lot PART 2. As with all types of massage, you’re supposed to drink lots of water afterwards to replenish your body. Lots of water consumed due to point 1 = point 3.
We talked about compressions, the different types, different methods of maintenance aside, cellulitis, reflexology lymph drainage, and cosmetic surgeries. It was great to be able to talk to someone who has studied lymphoedema and helps people manage it as their job. I know that is literally the job of the nurses at the lymphoedema clinic at the hospital, though I don’t feel like they were as informed as the therapist.
One notable thing that I took away from the session, other than how to effectively stimulate lymph fluid flow, was that the fluid is very protein rich. If those proteins build up, the area in question will become hard as it starts to form protein fibres. This leaves scar tissue, which is difficult to get rid of, although she did say it wasn’t impossible. While massaging, my therapist said that my toes are somewhat firmer than the other areas, and was something I should keep an eye on… I did tell her my goal is to have my ankle bone back, and actually be able to see between my toes. That sounds very trivial I know, but it’s something so simple that I wish I had. It will make me feel like I am back to having a normal leg.
On a separate note, since I came back from my session today, after logging off from work stuff (was WFH), I was able to reflect on all the information I learned today. And it has put me in a foul mood to be honest. Lymphoedema is a life long commitment, one that I didn’t ask for! No-one else in my family has this condition. Why me? I am now sat here with my leg bandaged up and my toes somewhat wrapped, and I look and feel like an idiot. I feel broken. I am 24 years old, I shouldn’t be like this. I guess I am just pissed off with myself. And to top it off I have swollen tonsils today so I am in pain.
I have no-one my age to talk to about this. There are no support groups in my city – I emailed the address for one but it turns out it was disbanded. I want to start one up for young people, and I know it sounds in vain. But they would benefit from it too. I just don’t know where to reach out to.
Whatever. I am waiting for my vegetarian pie to cook and I’m making mash and veg. Fuck you lymphoedema.