The lay of the land:
I’m sure that many friends, colleagues and people I’ve met over the years are aware to some extent that I have medical conditions. I am aware however that I've always worn a mask in public, shielded people from the reality of my situation and given nuggets of half truths. This was a subconscious means of self preservation, a reaction to my fear of how people would respond, of how my perception would change of myself and in the eyes of others, and a fear of how I might be discriminated against because of it.
I feel like I am ready now to lay all my cards on the table.
I find myself in a situation at the moment where I am unable to work, barely able to socialize, unable to go anywhere or do anything for/by myself. I rely heavily on the support of my family to simply exist day to day, struggling to bathe myself, dress myself, cook, live. I feel frustrated, let down by my body and at times unbearably lonely.
I’m hoping to, with your help, raise funds for an electric wheelchair so I can gain some of my independence back, help with these things that at the moment I can’t do or struggle to, and become a contributing/fully fledged member of society again. I see this as the first step towards regaining some control of the situation I’m in so that I’m able to actually take my life back and have some choices open to me. The sooner I am able to do this the better.
I’ve always been ill. I’ve perhaps not always been forthcoming and its time to spill the beans. I am currently lacking in any independence and the hope is that, with your help, we can raise the funds for an electric wheelchair and I can regain some of that independence back.
My conditions are:
This past year I’ve become a lot worse. I will be having surgery. I also have had an MCAD flare up which has caused severe abdominal pain and hugely impacted my mobility.
Any support would be greatly appreciated,
As many of you know I have several medical conditions, and over the years I’ve been diagnosed with more and more, with each primary condition developing secondary conditions. I now have a total list of 22, all of which are life altering, debilitating at times and all in all pretty shitty to be honest.
For total transparency and for the benefit of spreading awareness about these rare conditions, I’d like to tell you about the main trio at the root of my problems.
Ehlers Danlos Syndrome type 3 (EDS) is one out of a group of thirteen individual genetic conditions, in which there is a gene mutation affecting all of the body’s connective tissues, causing a whole array of symptoms that affect multiple systems in the body at once. In my case it has also caused secondary conditions as a by-product. Symptoms commonly include long term chronic pain, neuropathic pain, chronic fatigue, dizziness, palpitations, digestive disorders, subluxations, dislocations, abnormality in central nervous system function etc.
Postural Orthostatic Tachycardia Syndrome (POTS) is an abnormality in the function of the autonomic nervous system. Upon standing, the heart rate increases over 30 bpm (or to higher than 120bpm), blood pools in the lower extremities, the brain is starved of oxygen and you pass out, as well as a whole plethora of other symptoms. Yay floopy Jess! :)
Because this is an issue with the autonomic nervous system it also affects your basic bodily functions like, breathing, body temperature regulation, sleep, sweating. Symptoms also include dizziness or lightheadedness, fainting, palpitations, chronic migraines, weakness, brain fog, shakes, shortness of breath, chest pains, gut problems, nausea, visual disturbances, bladder problems.
There are great videos that explain the condition and its impact in this link on the STARS charity website.
Mast Cell Activation Disorder (MCAD) is a condition affecting the mast cells. Everybody has them in their body, they are a type of blood cell which play an important role in the body’s immune system, forming part of the initial defense system, reacting to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. However, with MCAD they are inappropriately triggered and released, having a negative effect on the body, essentially attacking itself. I mean, who needs enemies when you have a very specific type of blood cell doing all the work of a nemesis for them?!
It causes a range of unpleasant, sometimes debilitating symptoms in any of the different systems of the body, frequently affecting several systems at the same time, typical allergy symptoms such as itching, rashes, swelling, inflammation, vomiting, acid indigestion, diarrhea, bloating and severe abdominal cramping, anaphylaxis, faintness, hives, skin flushing, headaches, fatigue, irritability, brain fog and dermatographia.
If you’d like to more detailed information on the condition, then feel free to click on this link to the UK Mastocytosis charity support group for further reading.
This past year:
So what’s changed? Well yes, these are all genetic conditions which, in theory, I will have always had, but they are unfortunately all developing further, and the nature of these conditions means that symptoms are often episodic, waxing and waning in varying degrees and, unfortunately in my case at the moment, getting worse over time.
I had already been struggling with increased GI issues throughout 2017, with several very invasive tests, finding out I had an enlarged gallbladder, liver disease and that the hiatal hernia I was already aware of had more than doubled in size. There were more tests to follow this year in which I discovered my esophagus is paralyzed and so I will be having surgery to not only fix the hernia but to also try and support the base of my esophagus, reducing the various issues that I’ve been having because of that (choking, regurgitation, severe reflux etc.). Unfortunately, it’s a long surgery with a 6-week recovery period and there is the possibility that I’ll need a follow up surgery to make adjustments, and also because of my EDS I may need to have the procedure again further down the line because of the way my connective tissue works. But hey, goodbye erratic hiccups, right?
A surgery I had in September left me with a bad reaction to the anesthesia resulting in a longer hospital stay and a much longer recovery due to a POTS Episode, rendering me bedbound for weeks. This has raised some concerns regarding surgery and recovery this time around too.
Around 11 months ago I started experiencing severe lower abdominal pain, which was treated as a UTI. Due to my pesky Mast Cells I do get these regularly, but on this occasion it was not the case! I soon developed further symptoms far too ghastly to discuss in dignified company, fortunately you’re not ;) … I was then misdiagnosed with various other infections, conditions, had a cancer scare, had to give up work etc.
Then about 1 month ago the puzzle seems to have been solved. Those pesky mast cells I have clinging on to my bladder have gone nutty and have spread, so I now have mast cells hiding out in all the organs in my abdomen causing inflammation, which in turn is causing severe pain and a whole other array of symptoms I’m experiencing.
So now there’s a regime of new medications, long term antibiotics and a low-histamine diet. Really, it's working with a complete shift in lifestyle where everything is about self care, re-learning how to cook in this new limited diet etc.
Unfortunately, with such a drastic flare up in mast cell activity, it also drastically impacts my body as a whole with severe chronic fatigue, full body flushing etc. which has meant my mobility at the moment it greatly affected.
It doesn’t look as if I have all the puzzle pieces yet. I still have very regular hospital appointments, going for more tests and finding out more weird and wacky things about my body. The constant invasive tests and toing and froing in itself has taken quite a toll both physically and emotionally.
I have worked really hard throughout this experience to keep on top of my mental health and ensure that I don’t get into a situation where I'm depressed purely because of this situation, that would be such a waste. I am however at a point now where I need that extra help to be able to do that. I'm finding myself very lonely and frustrated...
Having a wheelchair like this would really help me to reengage with friends, with time to myself even and also potentially working and feeling my self-worth again.
I am no longer able to go out by myself, and find myself being entirely reliant on others.
A dear family friend has given me an attendant-propelled wheelchair which has at least meant that I'm able to go out with people, giving me the much needed connection to the outside world which I otherwise wouldn’t have had. It is not without its flaws though, I have to be pushed by someone, so I'm still reliant on someone else and also don’t have full freedom and control over where I'm going. Again, whenever I am going anywhere or doing anything I am entirely at the mercy of someone else’s availability. This also can play quite heavily when it comes to those negative niggling voices we all get in this case telling me what a burden I am.
I would like to raise the funds for an electric wheelchair allowing me to increase my level of independence ten-fold. I’m sure you can imagine this hasn’t been an easy decision to come to and it's one that has taken me quite some time to come to terms with, again wrestling with those same demons which have kept me from being open about it in the first place.
However, with an electric wheelchair I'd be able to go where I pleased, Dalek universe conquering plans aside, and I could do it with out having to rely on someone else doing it for me, or even just moving about on my own, which is such a simple desire when you’ve got it. Unquestionably it would be the best decision for me and one that I’m now ready to make.
Whilst this is something I would love to get for myself – since I’m unable to work at the moment, don’t have a bottomless savings account, and haven’t recently won the lottery (I wish), I have no way of self funding this, so currently I'm just stuck either at home or very close by in a radius that I can be pushed to, or I have the occasions when other people take me out with cars…
I’ve taken quite a lot of time researching and test-driving this chair and have chosen it as it fits my specific needs.
· Light-weight and can fold up easily for transportation for my family to pick up and move around.
· Built-in suspension whic
· I can travel with it on a plane!
· All in all it's a great chair in terms of its usability for both inside and outside on rougher terrain.
After researching electric wheelchairs I found out just how much cost there is involved in maintaining them, outside of the initial purchase, something that currently I wouldn't be able to cover myself.
The amount we're hoping to raise will not only cover the cost of the wheelchair, but it'll also cover the extended warranty as well as the first 3 years of insurance. I’d even get breakdown cover with a call-out service, which is amazing!
Whilst this may be a struggle I'm going through, its not in isolation. I have a wonderful family I love, who has supported me and been there for me throughout. I am acutely aware of the pressure and trauma of seeing someone you love in pain, suffering and struggling. The burden and strain that people put on themselves to care for those they love can sometimes go beyond what might be good for themselves.
I am certain that I am not the only person that would benefit from this wheelchair, and I'm sure it would also ripple out, helping those that surround and care for me.
I get the impression this has been a difficult year for a lot of people in different ways, I know I’m not alone in that in any way. Any help or support that you are willing of able to give in any shape or form is greatly appreciated, especially taking the time out of your day to read this (I sure can go on a bit!). If you have any questions about anything I’ve brought up or anything I’ve said then do feel free to contact me. I’d be happy to answer any questions you have, or even just have a conversation :)
Thank you for any help you can offer, I'm truly grateful x
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