The lesser spoken symptoms of ME and EDS

adam-niescioruk-hWzrJsS8gwI-unsplash

It’s nearing the end of all the awareness months and just to get that lil bit more awareness out I thought I’d focus on the not just fatigue parts of ME and the not just joints part of H-eds. Now I do want to add a disclaimer that these are my experiences of symptoms. Not everybody’s. I have a mild case of EDS and co so understandably my experiences are different to someone with a more severe case. My ME is here there and everywhere in severity although my new supplements are getting me out of the horrific flare I’ve been in. We love D-ribose. The taste no. Not collapsing multiple times a day, just trying to get to the bathroom yes. I’ve never been severe, or super severe though so although those symptoms have happened they’re not a constant.

That was way too long of an introduction! Lets get on with the content.

EDS is bladder pain, bladder discomfort. The more full your bladder is the harder it is to urinate. The pain feels like it’s growing by the minute and it’s all consuming. You get frequent infections.

It’s nausea, food just not feeling like it digests. Even drinking water can cause nausea and a sort of sloshy feeling that a healthy body would only get if they drank too much. I personally find squash and diet coke kinder to my stomach than water, no idea why that is! It’s spending money on countless anti-nausea remedies and OTC medication, finding often they are of limited effect. GPs are reluctant to offer anti-emetic prescriptions in the UK.

It’s bloating, retaining so much water that your painfully bloated you feel and look pregnant and go up a clothes size or two on bloat alone.

It’s reflux, sometimes so bad that it keeps you up at night.

ME is pain, never ending pain. Frequent migraines, light sensitivity which not only causes pain but dizziness. Laying in a bedroom with the curtains seldom fully open really gets quite depressing.

It’s unbearable head and neck pressure. It can be kind of eased by hanging upside down at least for me but that’s not sustainable for a long period of time.

It’s drop attacks, heart palpitations, breathing difficulties.

The brain fog that leaves you feeling stupid and can be really quite scary at times.

Cold extremities despite being in a heatwave and sweltering.

Blurry vision. I don’t think the list of ME symptoms ever ends I could write a book, but it’d be a boring book so I won’t. I hope you’ve all either learnt something from this list or if your unlucky enough to have these conditions yourself or in the process of being diagnosed that this somehow helps make sense of your symptoms and makes you feel less alone.

 

 

Dealing with rejection

cristian-newman-tnxRFtXI9dI-unsplash

I don’t think I’ve already covered this, or if I have I’ve not dedicated an entire post to it. Which is strange considering just how much rejection I have faced.

At the end of April I was rejected from my dream job, although I was put on the reserve list so maybe if we keep our fingers and toes crossed it will come to me. Or not and something else will happen that was so meant to be.

And very unlike me, I dealt with it okay. Maybe I’ve experienced so much rejection that I’m immune to it.

I was able to appreciate that getting as far in the recruitment process as I did was an achievement in itself. Many people who get the job are a lot more qualified than me, or a lot more privileged and from better universities.

I was able to appreciate that rejection isn’t the end of the world. It doesn’t mean I’m not enough or I didn’t try hard enough.

It’s just life.

Life makes no sense sometimes especially when your dreams seem to just not be coming together. But I truly believe that one day it will all make sense. l

God has a plan.

He just doesn’t make us aware of that plan.

You are sick enough for help: Mental Health Awareness week

dustin-belt-lg4fM9Y2pGg-unsplash

It’s the end of mental health awareness week and honestly we shouldn’t need one but there we go, we still do. Although we have come a long way there is still a significant amount of stigma out there.

Today I want to talk about, well write about how we all have mental health and there is never a point where you are not sick enough for help. Be that therapy, counselling or medication or even just that little bit of extra support from family, friends and collegues.

Mental health is just like physical health. Sometimes it can be good, sometimes it can be bad, sometimes it can be somewhere inbetween and just like physical health we shouldn’t ignore it if we start to feel it going because if we do ignore it, it will likely get worse and have a knock on effect on other aspects of our life. If it gets worse, it’s harder to then get back under control.

Just like physical pain, it’s better to take action when the pains a 3/10 because once it gets out of control more and more needs to be done.

Ignoring your mental health and sacrificing it above all else in life isn’t a badge of honour, it isn’t a way to show how brilliant you are or how hard you try. Your not being pathetic if you take time out, get therapy, take medication that’s okay. You are valid. You are worthy. You are not wasting the time of healthcare professionals. Even if you live in the UK and are reliant on the NHS. If you think you are having enough of an issue with your mental health that simple self care isn’t helping and only you know that you are worthy of help. See your GP, self refer to therapy.

I know living in the UK it can be hard, especially as a teenager because CAHMS often only help you in a timely manner if your on your death bed and even then…. I won’t waste words ranting about CAHMS though.

Many trusts now offer self referral to therapy, although limited in their use for people like me with currently mild/moderate anxiety and depression this can be really helpful  I have a lot more anxiety than depression though! I’ve been really quite anxious these past few days just because my family don’t understand ME but the second I try to explain they start spewing abelist language on me. That’s an anxiety that’s hard to overcome, when the people who are meant to support you most don’t see nor understand your illness but it’s kind of your fault because have you really tried but the issue is your too anxious to try.

That was a tangent…

Although there’s still waiting lists it’s not the 6 months to many years that can be found with other forms of mental health treatment on the NHS.

You are sick enough, you are worthy and you are deserving. Remember it’s better to prevent these issues arising at all, through rest, be selfish once in a while. Self care is important, you shouldn’t burn yourself out trying to be everything for everyone.

EDS Misconceptions

wolfgang-hasselmann-6e_fwXcSXQI-unsplash

Good afternoon, evening, morning. Thought I’d do a follow on from my h-EDS post by sharing some EDS misconceptions,

  1. You have to be flexible to have EDS No, although many people with EDS are flexible there is a difference between flexibility and hypermobility. Flexibility comes from the muscles, however hypermobility comes from joints and ligaments. As a lot of people with EDS find they’re muscles tighten to prevent dislocations they may not be flexible. Furthermore widespread hypermobility isn’t present in all  types of EDS. In vascular EDS the hypermobility is more in the hands and feet.
  2. You have to be severe to have EDS  No. EDS is a spectrum disorder. This means that although yes many people are severe and have multiple comorbidities it is not essential to be on the more severe end of the spectrum.
  3. You have to have a family member with EDS to have EDS No. Spontaneous mutations happen and the nature of awareness only recently increasing and many likely going undiagnosed in the past means that a family member may indeed have it but just isn’t diagnosed.
  4. You have to dislocate Mahoosive misconception. Some people only partially dislocate others don’t even do that.
  5. If you have high arches you don’t have EDS No – both flat feet and high arches are signs of EDS
  6. You have to have stretchy skin to have EDS – No No No No No. This is associated with the classical type more than other types although can be present in other types.
  7. EDS only affects the joints –  No just no. It affects skin, gums, the bladder, bowels, uterus, mast cells, stomach, uterus. Literally everything
  8. Exercise cures EDS Again no. For those who are able yes it can help but there are many with EDS who simply can’t be it due to the EDS itself or a comorbid condition.
  9. Everyone with EDS bruises easily No. Again this is just one symptom many with EDS experience, but not everyone.
  10. It’s just a name and it doesn’t matter what you call it No no no. EDS is often more respected by doctors than HSD or hypermobility syndrome or benign joint hypermobility. It matters.

 

Fibromyaliga

Canva-Definition-of-the-word-Fibromyalgia-in-a-dictionary

May 12th was fibromyalgia awareness day. May is also fibromyalgia awareness month so I thought I should write a lil something to raise awareness. Yes I have three chronic illnesses with the same awareness month.

Fibromyalgia is a widespread chronic pain condition which causes pain all over the body. This is generally nerve pain and is often sharp, electric shock like burning pain. I find mine can radiate around my body so much so that I am unsure what part hurts the worst. Or it will target a specific part of my body like my lower left leg and stay there, leaving me unable to walk normally.

Fibromyalgia often causes tender points and previously this was used as diagnosis. I don’t often get tender points, other than in my lower legs, not that I’ve noticed anyway and I’ve never had a full tenderpoint examination.  These tender points mean some sufferers find that they can’t bear their own clothes without causing more pain.  Although I don’t have tender points as such my sensitivity to pain has increased. I never used to feel blood tests or vaccinations and now “sharp scratch” feels like a lot more than a sharp scratch.

Fibromyalgia also causes morning stiffness and unlike ME/CFS which is a very similar illness can be managed through exercises. (Low impact exercise like swimming, Pilates, walking etc.) As I have both I find gentle movement and stretching can oftentimes help my pain, especially in the moment but there’s a danger of doing too much and then getting payback.

People with fibromyalgia often get migraines, suffer from IBS like symptoms, have numbness and pins and needles, fatigue, brain fog, TMJ, bladder issues, in females increased period pain. On that note there is a link between endometriosis and fibromyalgia, or atleast seems to be.

I know many women who have both and I myself am suspected to have both and a doctor has actually said to me before I got my fibro diagnosis that the increased widespread pain I was feeling was likely due to my body being in so much pain with gyne stuff for so long.

It causes insomnia, which for a fatigued population is really not fun. People without sleep issues probably think if we were lacking that much energy we could just sleep all day.

But fatigue and sleepiness are very different things and sometimes our symptoms are overwhelming that it is simply impossible to get to sleep.

It’s common for people to mistake it as a psychosomatic but although fibro can be triggered my emotional trauma it is not psychosomatic. We just don’t have a biomarker. It’s a diagnoses of exclusion although many people get fibro diagnoses and later find they actually had something else.

It’s also common for people to ignore the spectrum and think just because one person can do an active job we can all do active jobs or we can all work at all. This isn’t true. It’s so complex and varied, every person with fibro is different and some of us have access to effective pain control others of us don’t.

Ibuprofen and paracetamol may help some people but it does nothing for my symptoms. I take the maximum dose of gabapentin but also use heat ice, heat cream, freeze gel, spiky balls and self massages.

Pain management is a cocktail of things. It’s also very much trial and error. Managing the other symptoms can be even harder, with doctors often unable to provide useful treatments the cost often falls upon us to make often expensive lifestyle changes which will come to no surprise as often unaffordable, especially if relying on benefits.

Fibro has no rhyme or reason and is almost impossible to understand until you get it but I hope this has given you all some sort of insight.

When lockdown ends please don’t forget us (ME awareness day 2020)

raul-angel-ph9GV_xQlY8-unsplash

ME or Myalgic encephalomyelitis is also known as Chronic Fatigue Syndrome. It is an illness categorized by Post Exertional Neurological Exhaustion.  This is a worsening of symptoms we already experience, such as dizziness, fatigue, pressure in the head and neck, migraines, difficulty speaking, brain fog, muscle weakness, widespread pain, numbness, temporary paralysis, nausea. noise and light sensitivity, full body shakes, sore throat and swollen glands. The list is never ending and it can be truly debilitating and overwhelming. This leaves many sufferers housebound of bed bound and only a small proportion  can work full time.

That scares me especially. I’ve always known by working full time I’m doing too much and my ability to continue without deteriorating has depended upon sacrifices and careful pacing. Especially in this season where I have deteriorated significantly. I am stuck on the sofa, often reclined or in bed. If I leave the house just to pop to the shops which are in a close proximity to my flat I get PENE. Working a full day, even reclined feels so unbearable that words don’t even exist to describe it.

This means many of us with ME are already isolated. Even if we can work for many of us it’s from home and work often floors us so much that we may not have the energy to reply to your messages in a timely manner let alone have an outside social life.

We’re always in lockdown. We’re always socially distancing and in some ways this period of lockdown has opened the world up for us. People are checking in on us and zoom is a thing. The worry is that once people start being able to go out into their social bubbles and back into the workplace is that we will be forgotten once more.

Missing inside our homes.

Please remember to check in on us. I know it can be frustrating because we don’t always have the strength to reply or for a full on coherent conversation but we greatly appreciate your checking in on us.

And please consider spreading awareness on behalf of us. There is still a lot of misinformation out there.

Even doctors believe we are lazy, just anxious and depressed, that exercise is good for us.

None of these things are true.

ME is real and can oftentimes be more debilitating than Cancer, MS and heart disease.

The problem with Illness Bingos

blank-bingo-cards6-680x1020

These bingos have been floating around Instagram for years, they’ve only recently popped back up into the stories of those whom I follow. Maybe due to pandemic caused boredom.

I find these bingos problematic, on many counts. Both the physical health ones and the mental health ones. This isn’t an attack on anyone I’ve seen doing them or anyone creating them because I’m sure many people don’t realise the issues with them. It’s just a harmless piece of fun right? Maybe… to you. But there are some real issues associated with them that I’d like to discuss.

With both the physical and mental health bingos create some sort of sick competition as to whose the sickest. Who can score the most with symptoms, treatments and comorbidities. There has been this toxic competition going round certain parts of the spoonie community before and it’s simply not okay. A place that many come to for support and a sense of community. A place that many people come to in order to feel less alone. It’s supposed to be a safe space and not a source of ones own illness imposter syndrome.

This can be even more damaging with the mental health bingos. It’s already common with mental illnesses for people to believe they’re not sick enough for treatment. These bingos make that worse.

Mental health bingos can also be hugely triggering, especially eating disorder bingos which often give ideas for behaviours that can be used or use numbers.

It hurts my heart to see these in the recovery community, where someone’s followers are often highly vulnerable.

The thing with Instagram and especially stories is that it’s hard to avoid taking in this information. Unless someone puts a trigger warning on before doing the bingo and you can then choose to click off of the story.

I know how hard that is when we have limited energy and when we may not realise the trigger as it doesn’t trigger us. But if you want to engage in these bingos I believe it’s the safest way to do so.

 

Hypermobile Ehlers-Danlos Syndrome

zdenek-machacek-FjhCWctnFQM-unsplash

It’s May. Which is apparently all of the awareness months. Feels like some sort of conspiracy to be honest. But one of those is Ehlers-Danlos awareness month. (EDS)

All forms of EDS are genetic disorders of the connective tissues. Connective tissue makes up pretty much everything in the body, other than the muscles which means the symptoms and signs can be prevalent throughout the body and there are a number of common comorbidities that arise.

I’ve recently been diagnosed with the Hypermobile type of EDS (h-EDS). And I’m still kind of in denial and maybe that’s because I’m not that bad. I’m not that hypermobile and I’m certainly not flexible because I have v tight muscles. I score 5 on the Beighton Scale, but also have hypermobile ankles, hips and shoulders and suspect my neck is hypermobile as I am getting more issues there. Weirdly I do partially dislocate parts of my body that aren’t hypermobile, but based on things that have been said to be by physios about how I stand and how that’s caused other issues, it’s likely I was in the past.

There’s no genetic test for h-EDS yet and diagnosis is made by ruling out other conditions including other forms of connective tissue disorder and EDS if you look like you may be a candidate for one of those diagnoses and by ticking a certain number of boxes based on hypermobility and wider manifestations of a connective tissue disorder. (Stretchy skin, velvety skin, Easy bruising, mitral valve prolapse etc) Family history and actually being symptomatic is also taken into consideration.

You don’t need family history to get diagnosed or even to have EDS as spontaneous mutations are possible, and it could be that previous family members are less effected than you or doctors just failed to diagnose them and that’s why there’s no family history.

I don’t have a diagnosed family members but I don’t think I’m a spontaneous mutation.

Denial or not a diagnosis of h-EDS explains my entire life. It explains the proprioception issues I have, it explains my bad handwriting. It explains why I went through I phase of spraining my ankles every two seconds and them not being the same since.

Me constantly having injured ankles was the first time I experienced people not believing me when I said I was in pain. I was 8 and my teachers believed I just wanted to sit out of PE. I see how that can be interpreted, especially when it happens week in and week out but that wasn’t the case. I actually loved PE, especially back then as I had friends to go with. But the impact of running wasn’t good on my ankles. My parents belived me at this point although they didn’t take me to a doctor and just said I’d sprained my ankle.

It explains the constant nausea I experienced since the age of 10 until I figured out how to cut things from my diet and control what I ate to manage it as best as possible. Now I’m able to start reintroducing things. The headaches, the knee pain caused by running and horseriding. I eventually quit horseriding because an hour of my feet in the stirrups was just so uncomfortable. Let alone two. The shoulder pain the hip pain.

I could go through my life bit by bit in order of what joint went wrong first.

I now have multiple daily subluxations (partial dislocations), many of which the outsider is unlikely to notice. They’re not all excruciating traumatic experiences. And often I hide it. No one wants me to share very single subluxations and I don’t have the time and energy for it. I fully dislocate less often but it happens and it hurts. My muscles tighten up to prevent these things from happening and that also hurts. I’m in daily widespread pain. I also suspect my bladder issues are EDS related and although they’re not bad by EDS standards it still hurts, and it’s a nightmare. I suspect I have retention issues and it means the more I need to go the less I can go. I have painful bladder spasms and get frequent UTI’s. I constantly need to go because I never get the feeling that I’ve emptied properly. I’ve also experienced incontinence which was embarrassing when I was younger. It has a very real effect on my life.

And that’s why we need awareness. Not just to the general public but also to medical professionals who still struggle to connect the dots. It takes a lot of emotional energy to go back and forth to the GP over what is often taken as 101 different symptoms. It’s exhausting to tell each new doctor the same story. It’s exhausting to get 101 referrals for all the issues you have, and that’s why I haven’t yet solved the entire puzzle.

I have so many symptoms that it’s simply overwhelming. We need allies, we need advocates we need doctors to stop putting it down to “growing pains” or some sort of hysteria or psychological distress.

We’re really sick, albeit at different levels of sick and the earlier the diagnosis the more chance of people not deteriorating as much as they otherwise would.