I started knitting this yesterday to take my mind off my ongoinglower backache. The major problem I find having Secondary Lymphoedema (like many lymphies) is coping with the summer heat. A swelling time for many frolicking in the sun but I am inside mostly keeping my limb out of the sun rays!
‘Suggested Wellbeing Tip’
Keeping cool tips are varied and the latest one suggested to me online is to buy a dog cooling mat.
I recently ordered this product off ebay.uk. A buy one get one free offer.
‘My Wellbeing Tip #3’
My wellbeing tip is to use Organic Aloe Vera gel (200ml by Aloe Pura Laboratories £4.70 ebay.uk – you can get after sun products too).
It is best kept in the fridge so as extra cool when applying onto the lymphatic limb and simply switch on a fan.
The floor fan I have is huge and I only ever use setting one out of three. If on setting three the room becomes a mini tornado with stuff flying wildly around. Less dramatic on one!
Anyway, if your a lymphie or non-lymphie and want to cool off in summer indoors it is a good tip. There are not many humid evenings in Shetland, Scotland but with the latest heatwave in the U.K it is very good to help keep the lymphatics cool!
This is my first blog post using a mobile ‘WordPress App’ so, hence shorter in length. I find this app helpful if I see a grammatical mistake or needing to quickly update information. All my photos are updated only through using a laptop computer. My mini-review:
‘Love from Shetland’ are a small business that produces handmade soaps and bath products with their own goats milk and a variety of oils. The cosy new shop smells and looks great too!
Please read the following:
‘New Location on Commercial Street’
On 28th of April ‘Love from Shetland’ re-opened their doors to customers this time at the other end of the main Commercial Street, Lerwick, Shetland. They moved location from opposite the Queens Hotel to opposite Harry’s department store. When I arranged to meet up with Esther Jarmson and chat about her skin products I didn’t realise it was their first day opening. I remember it was a gorgeous sunny Saturday afternoon and from observation the atmosphere was buzzing with delighted customers young and old.
The excitement gathered pace in the shop when the arrival of three week baby goat triplets Edwina, Flora & Daisy!
‘Connor the Goat’
Connor is well known in the Shetland community in helping raise money for the local RNLI lifeboat.A great worth while cause:
The first piece of information I read on ‘Love from Shetland’ was that all their soap products, quote:
go through rigorous cosmetic safety assessments to ensure that they are all lovely and safe for you to use
Their information leaflet also explains that they use no palm oil, parabens or nasty sis’s. You’ll need to google what they all mean! All products are made by hand by milking their goats and using up to 7 to 10 different oils in them.
Esther goat milk soap creation is her own unique recipe. There are no other soap products like it globally
Visit ‘Love from Shetland’SHOP for a variety of great gift ideas:
The ‘Love from Shetland’ products are very popular with cruise ships, visiting tourists and locals. The new shop is even more visible now that they have relocated. In terms of the local community Esther runs workshops with local children and helps them make their own bath bombs. As a bonus they get to cuddle the goats too!
A fun and rewarding day at school I would say!
Keep a look out for ‘Love from Shetland’EVENTS page:
The marula is a really moisturizing soap it is packed full of antioxidants that rid the skin of aging. The only product I have used is the marula oil soap. I recieved it as a gift last year on my birthday. All I remember is that it lasted for ages and it is great on your skin.
TheHand Feltedsoap range is explained by the following photo:
These soaps can be left in their felted pockets and used like a sponge. All the ‘Love from Shetland’ soaps are best used with a wooden soap dish with holes in it so as to air out and reuse. These wooden dishes are sold seperately. In the following photo is the hand made ‘oo’ gift bags. Each ‘oo’ bag is felted by hand using Shetland wool. They are all made by Esther mother Esme who was there to greet me when I first arrrived.
The Shetland word ‘oo’ means ‘wool’
‘Bath Bombs Products’
Lastly, the ‘Love from Shetland’ bath bomb products. These are a firm favourite of mine. They look great on display in their various baskets around the rustic looking shop. They make great gifts too!
Bath Bombs contain bicarbonate soda; citric acid; goats milk powder; avocado oil; jojoba oil; strawberry; clementine; prosecco; white lily; ginseng; blueberry and parma violet to name but a few…
My bank holiday started by dreaming of a bank funnily enough. It was like the one in the Harry Potter film all fortified and filled up with greedy looking miser elf’s. I kind of went in and blew it up with lots of bombs. Then I woke up and realised I was coming down with a cold. Strange dreams are caused by fevers and that was one of them! Now I am on the mend and back to blogging on the tail end of this sunny or rainy (depending where you are) bank holiday weekend.
As I started to write this blog this morning I noticed the prompt word from somewhere on WordPress was ‘bubble’. Hence notice the overall theme is bubbles. Anyway, I wrote out 300 plus words then decided to delete it as it was purely cathartic. It was pure crap for a good reason. I wrote again another 400 words and when it came to publish the opportunity had closed. Mmh, well it is maybe not meant to be perhaps another time…
‘The Cellulitis Bubble’
The one thing I can publish today was the toxic bubble of cellulitis I endured over four precarious days.
I started to recover slowly but my lymphoedema leg became a celestial map of red hot drawf planets. I could have played a galactical spot-to-spot game.
To be honest I was out of it with the fever and then the medication gave me side effects I didn’t anticipate…
What is it?
Day 1 & 2 I thought I had caught a cold. This was my first time and hopefully the last. The chills are the worst!
From my own experience the first thing about having cellulitis is that I wasn’t fully aware I had it for the first twelve hours. Initially I went to bed feeling the chills last Thursday night. A series of strange dreams as mentioned before and then I woke up with a higher temperature and feeling nausea on Friday morning. It felt like flu, but it was different. The whole day of Friday was a wash out and I couldn’t do very much. Then when I saw my red hot spotty lymphoedema leg around 4.40pm I immediately called for a prescription. The chemist shut at 5pm and it was the weekend the next day! I wasn’t in a fit state to go anywhere. However, my partner retrieved my meds in time and I was so glad he did it! I knew if he didn’t it would require a sixty mile round trip to the local hospital and that wasn’t where I wanted to be on that day. The cellulitis symtoms of chills, nausea and high temperature are horrible. I just wished I knew earlier in the day but I felt no cellulitis pain that came the next day…
Day 3 & 4 Pain and then some more pain
On Saturday morning I stood up and it felt weird and uncomfortable. I had to use my walking stick to get about. My lymphoedema leg was very warm and it was more swollen than usual. It felt like my leg was filled up with warm to hot potatoes with needles sticking out when I stood up. It felt heavy, hot but as soon as I was horizontal all the pain went. On all four days I never put on any compression garments as advised by Lymphoedema literature I had to hand.
In this bubble of convalescent I pondered and chatted by text to a friend about the causes. I knew I skimp on mosturising a little and all my compression garments were clean. I was mystified why it occured. Then it was an eureka moment and I told my friend why it occured the way it did. I shall come back to this in another blog in the future for now it is not important to mention.
On Saturday night my sleep was very poor and I woke up my partner many times as I ran to the bathroom trying to vomit up but nothing ever came. It was the antibiotics they can play havoc with your stomach lining.
On Sunday morning I felt like my stomach had been in a boxing ring. My partner looked like he hadn’t slept (he hadn’t) and he slowly went off to work not noticing he had put on a dirty jumper. A slow-mo of a morning. The only thing I did notice that morning was that I was wearing the same colour as to what I was eating. A splash of yellow and a healthy bowl full of bananas, honey and natural yogurt. I may have look like a ray of sunshine but I felt like I had been sucked into a black hole and spat out again.
In conclusion my friend said I have now officially made it into the cellulitis club! Oh, sweet Jesus.
A few days ago, I flew down to the mainland Scotland for my yearly trips from the Shetland Islands to update my compression garments. Ideally all limb garments for lymphoedema need to be updated every six months.
Like all lymphoedema patients updating the fantastic elastic is the key to managing this condition well
Travelling to and from Shetland in winter can sometimes be challenging. All good and well intentioned plans of getting away in time are no match for the changeable weather forecasts.
(Calm snowy day in Shetland photo taken from car window)
In one snow laden year I cancelled my planned trips three times due to bad driving conditions. It usually takes me about forty minutes to drive to Sumburgh airport which is located at the south end of the Shetland islands.
When the weather conditions forecast snow, I avoid booking my travels until all the snow has melted or less icy. My reasons are obvious, but I hate driving in bad conditions. It depends if the roads are well gritted or not and they usually are in Shetland.
If a fresh layer of snow comes through the night before I am due to fly out I have learnt one thing I phone and cancel. It is better to be safe than sorry. All patient travellers are given strict instructions on how to cancel within the time limits before any flight departures. I have never had any problems with patient travel run by the local NHS health board. Patient travel have never made me feel pressured to go if I don’t want to.
I enjoy flying as it is a quicker way off the island and secondly, I return home the same day. There is the Northlink ferry option and that requires two overnight stays on board.
You cannot miss these Northlink ferries in harbour they have a giant Viking man painted in blue on white!
It is exactly the same colours as my logo my-legoponics & life-tinkin and the Shetland flag too
The ferry option is great if you want to do some retail shopping on the mainland. Personally, I find trekking around the high streets shops hard going with my lymphoedema so it very rare I do this type of shopping.
In conclusion, travel planning for me best works when the weather forecast is fair. My recent trip went like clockwork and, I hope it does next time be it flying or ferry. The choices are optional, and it is provided free to all residents of Shetland.
Now that the spring equinox for 2018 has arrived I welcome more daylight hours and possibly getting outdoors! (:
It is a sunny and crisp Sunday morning here in Shetland. The blackbirds and little sparrows are chirping loudly from a neighbours bird feeder. The odd squawk from a distant seagull
Since I started this blog a week ago conversations about the lymphatics in general was interesting. Apart from the few friendly enquiries and supportive chats one conversation stuck out from the rest. I asked the person in question for their permission to blog. They preferred anonymity, so I shall refer to them as Robin.
In a light-hearted and humorous way Robin texted
I wasborn special’ and, quote having double Legoponix in both legs
(Awesome typo 😊 so used it as heading). It was news to me and I never guess Robin had this condition at all. Robin agreed with the quote from my first blog, ‘…a ‘common delayed diagnosis’ under the heading of ‘Diagnosis’.
Robin points out,
I was undiagnosed for ages and working self-employed on my feet for up to 14 hours a day…I got super chunky’. Robin goes onto explain, ‘the NHS investigated but it was Macmillan nurses that picked up my case
Briefly, primary lipoedema is a condition that you are born with and it can run in the family. It can miss a generation but can be passed on by genetics. Lipoedema can be easily overlooked and commonly individuals are forever dieting and watching their weight but it never goes. Getting an early diagnosis and correct treatment is important.
After Robin was diagnosed,
I then had two rounds of cellulitis’. Upon asking me if I ever encountered it I confirmed never. Robin answered, ‘you haven’t lived it’s a barrel of laughs!
I can’t imagine and hope to never encounter it but the likelihood is a higher percentage than non-lymphies. Oh well, my attitude is all you can do is be prepared. In both lymphie conditions the skin gets tighter due to swelling of limb/s and can cause the deep layers of skin to come out in painful cellulitis if not properly maintained.
I can’t imagine what it is like but after reading some recent posts from various social media groups it is plain nasty. Flare ups look painful and from one post I could see an individual was hospitalized. The LSN Network provides a helpful leaflet called ‘Management of Cellulitis in Lymphoedema’. If you sign up as a member you can order specific leaflets and DVD’s for your own specific requirements. I keep my leaflet in storage for now hidden from sight.