Showing posts with label #LUPUS. Show all posts
Showing posts with label #LUPUS. Show all posts

How to survive a Lupus flare


I have been thinking about writing this post for some time now and had planned to do more research but I decide to avoid speaking like a doctor and just talk from my own experiences.

The best thing is to avoid having a flair at all now there is nothing you can do to prevent flares happen there are a few things you can do to make them less likely. 

Take medications regularly and carefully and talk to your doctor or pharmacist about which over-the-counter or medication to avoid because they could cause a flare.

Take Care of Yourself
Get plenty of rest, eat well, don't smoke, and exercise—these are keys to being your healthiest self.


Relax
 Stress can be a major cause of flares, but having a chronic disease like Lupus is itself stressful! So take time for yourself and be sure to not overdo it at work or around the house.
Stay Out of the Sun
This is hell for me because I’m a summer bunny bit it is crucial. Make Sunblock, hats and sunglasses part of your daily routine and keep your time under the sun brief, and if possible plan outdoor activities for later in the day.



Survival Tips
If you listen to your body over time, you may get to know your own body so well that you'll know what causes a flare and sense when one is coming on. The warning symptoms I get are feeling more tired than usual, weakness in my muscle weakness and pain, and brain fog, I’m sure the symptoms and warning signs are fore every in is I recommend that you take note of how you are feeling for future reference.



If you sense that something is wrong please call your doctor right away. He or she can often help control the seriousness of a flare.


Don’t feel guilty

I had a major flare the week I was due to exchange contracts on my first flat. Ok now looking back buying a house is one of the most stressful things you can do so in high insight I’m not surprised that I had a flare, I literally had to get my dad to drive me to pick up my keys and hobble to the flat. Then it was right back to bed.
This was a devastating anticlimax, especially as I had booked time off work to jump in and make the flat mine and unfortunately I couldn’t do it. But on the bright side the flat is all mine and it isn’t going anywhere...




Get that ME time

 Let it be all about you; every on likes different things when they are sick and one of the things I like is my own company. I can’t be bothered for having conversations or entertaining any one, I just need the following:

My bed /or sofa for a change in scenery

Electric blanket

IPAD –This is very important
Nexflix
Youtube
Lots of drinking water
Hot bath
Epsom salts
Naughty snacks

if you can’t have junk food when your body is attacking itself then when can you?

      My faves are:
Crackers with jam
Toast with jam or peanut butter
Cheese toasties
Jamme dogers
Or if someone is willing to go and get it for me
Mac Donalds

Get over the guilt
I hate calling in sick from work, it’s always at a time when I have a have a super heavy case load which will get fobbed off on to my colleagues who will obviously love me when I return the office. Or I’ve made an arrangement to meet a friend and now it is the third tie I have cancelled and I’m feeling anxious because I know she will be super pissed with me.

Oh well Life goes on or it won’t if you keep killing yourself to please everyone.

If your friend doesn’t understand then they are obviously not your friend. Work is a different matter, but it is a good idea to speak to your HR department to help you to explain you situation to your collogues

Ride the pain
for many autoimmune diseases, a flare means intense pain. Don’t feel any guilt about relieving it with medication. 
Although many of us have the goal to get off our meds, that takes time, too.       


Sleep 
 For many autoimmune diseases, a flare means intense fatigue. Don’t feel guilty, yes you probably have clothes in the washing machine that need to be hung and the flat looks like a bomb site.
Remember that it is during sleep that your body heals and regenerates. Go to bed early, sleep in late, take naps. Let your body heal

All of those chores will be around when you are feeling better so, take all the rest you need,

Of course I’m not suggesting you sleep in your own filth, why not call in one of those      “if you ever need anything” favours friends and family like to give or  I recently came across a company called Handy who will dispatch cleaners for all your domestic needs (one time I got them to do my ironing). They even have an app.. AN APP

You can read my blog review on

Handy HERE:
And if you would like to try there services

CLICK HERE

Rest up

I know that sometimes the symptoms of a flare can make sleep difficult. Prop yourself with pillows for greater comfort, and just do your best to rest, any way you can manage it.

Detoxify

Health is a constant balance of nourishment and detoxification, and during a flare, you need support in both areas. Try one of these gentle methods: a dry skin brushing then a detox bath with Epson salts you will feel amazing I promise I have even found that hot Epsom salt baths really help to soothe aching muscles and swollen painful joints

Don’t be afraid to cry
Don’t fight those tears let them out

Remember it’s not forever
Remember that flares are temporary. When you’re in the midst of one, it’s easy to forget. Every flare I had, I feared it wouldn’t stop, even though flares, by design, are temporary all you have to do is ride them out and live to fight another day.

and you are not alone..
You are not alone!! I’m sure you have friends and family around you that support you but at the same time it’s probably hard for them to understand what you are going through and probably don’t know the best way to offer help and support.

Lupus UK offers loads of information and tips to help with coping with Lupus. They even have downloadable fact sheets that you can print off and give to your family and friends. They even have one that you can give to your employer (This one came in handy for me)

They also have a support group in Healthunlocked where everything is up for discussion, medication, depression ect. On occasion I have asked questions and have gotten amazing advice, I also try to help other members out by answering there questions if I can.

A new community I have just found out is called My Lupus Team.  They have an app that you can download to you phone. I have not been on there for long but everyone has been super friendly and supportive.

I have found hundreds of groups on Instagram, Facebook and twitter

I’m not going to list them all but here is a few hashtags you can try:

#Lupus

#Lupuswarrior

#Lupussurvivor

People put up some of the most amazing and inspirational posts that have defiantly helped me when I have been feeling down or unmotivated.
What’s your best advice for surviving a Lupus flare?

Living With Lupus But Still Blogging And Fabulous

Hey guys I hope March is treating every on well
Those that have been paying attention to my Instagram and twitter may have noticed some changes in my posts so I
thought I should explain it.
You may have noticed my food diary
 and my work out posts 
and also many of my hospitals visits-
I have never said this on my blog but some have figured out that I am a Lupus suffer for the past year have been dealing with a flare which is the reason for the hospital visits and also the reason that I have not been doing outfit of the day posts (Sorry guys the steroids have made me fat and I haven’t felt like taking pictures).

What is Lupus?
There are two main types of Lupus

Systemic lupus
Is a chronic and presently-incurable illness of the immune system, a condition in which the body's defence mechanism begins to attack itself through an excess of antibodies in the blood stream causing inflammation and damage in the joints, muscles and other organs.
The name systemic lupus implies that almost any organ or system within the body might be affected and lupus is perhaps the classical multi-symptom illness, deserving of far greater priority and investigation by the medical community.

Discoid lupus
Is a condition of the skin alone, and in a very few patients can develop into systemic lupus.
Lupus may be triggered by various means and can present in a bewildering number of ways, even to the extent of mimicking other diseases such as rheumatoid arthritis or multiple sclerosis.
The causes of lupus is not positively known though research has provided evidence implicating heredity, hormones and infections including viruses.
Some 50,000 may have lupus in the UK and 90% of sufferers are female, mainly between the ages of 15 and 55.
With its many symptoms, lupus can often be overlooked by a GP or consultant which may delay final diagnosis and a vital start to necessary treatment which can contain the disease and hopefully limit potential damage to the kidneys, heart, lungs or brain. Those diagnosed usually remain in medical care and receive ongoing treatment. Many symptoms will have less impact but there may be side effects.
Lupus can adversely affect the lives of sufferers and their families, and influence relationships with friends and business colleagues.

What are the symptoms of Lupus
Joint/muscle aches and pains
Permanent rash over cheeks
Extreme fatigue and weakness
Increased risk of miscarriage
Rashes from sunlight/UV light
Flu-like symptoms and/or night sweats
Weight gain or loss
Inflammation of the tissues covering internal organs with associated chest and/or abdominal pain
Seizures, mental illness or other cerebral problems
Headaches, migraine
Kidney problems
Oral/nasal ulcers
Hair loss
Depression
Haematological disorders including anaemia
Swollen glands
Poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold (Raynauds)
A person with lupus may have four or five symptoms, where some of these might recede and/or others develop.
Health Online also have a great diagram that demonstrates the effects Lupus Has On The Body

For more information about Lupus please check out Lupus UK

How does Lupus effect me?

Even though I was diagnosed with Lupus some time ago and i have been having a flare for nearly a year its hard to say exactly what my symptoms are because they change, 
I can honestly say no two day are the same for me, 
The most consistent symptoms has been 
Fatigue 
(However while i have been on Prenilsone I have had insomnia)
I would literally come home from work get ready for bed and go to sleep yet still wake up late for work the following day

Joint pains

 mostly in my hands, arms legs but I'm sure if pretty much had it in most of my joints by now i find that a hot bath helps with the swelling as dose good old ibuprofen 
I wont go through the long list of all my symptoms other wise this would be a long ass post lol!
 but I'm happy for people to email me at: wotshernameagain@gmail.com  if that have any questions about the above list of symptoms or just want some advise 
(I am not a doctor but I will try to help anyway I can)
Before I was diagnosed with Lupus I was naturally very slim and toned so I didn't think about the kind of foods that I ate or put much effort in to exercising then Steroids got involved and I am now having to consider what I eat and how it benefits my body and I have to say I am really finding it very interesting.
The girl that never ate ANY fruit or veg is now regularly getting her 5 a day and has discovered home made smoothies yum
One thing I must say I  am proud that I have managed to keep with my Wots Her Name Again Blog because honestly it has sometimes been my only motivation to get myself out of bed.
What can I say I do it because I love it and I hope you guys enjoy reading it bad grammar and all lol!

I am considering starting a Wots Her Name Again LUPUS BLOG which details some of the things I go through as a Lupus suffer and how I overcome them also so perhaps that will come soon.

As my health improves I hope to be come up with interesting posts more often so in till then thanks for reading my blog



Do you think I should write a blog about Lupus?