Now that I have completed the four weeks of Multi Disciplinary Team Inpatient Rehabilitation Programme for Functional Neurological Symptoms, been back home for long time now, I thought it’s about time I spoke more, as a lot of people have no idea what FND/NEA is, how impacts your life, and for the people around you, including pets in my case, who plays role in your care.
What does FND stand for Functional Neurological Disorder, NEA another abbreviation of it Non Epileptic Attack, also is dissociative seizures, blackouts which I all suffer with. The team I had, which everyone has when going onto this programme. A CBT Therapist, Occupational Therapist, Physiotherapist, Consultant and Doctor on the ward, however you also had one to one help with the nurses, which also played part in your stay.
Meet the Team: Sandra (CBT Therapist), Dhiren (Physiotherapist), Marina (Occupational Therapist), bottom pic- Clare (Doctor).
The support there was second to none, also the other patients on the ward made my stay even more comfortable.
So what lead me into going to this programme for FND, being inpatient at NHNN (abbreviation of it, as the name of it, is so long, so everyone just says NHNN, easier) hospital. Well believe it or not it’s one of kind programme, meaning this level of help isn’t offered elsewhere, maybe couple of hospitals, but for this length of time, inpatient programme like this, people travel all over the country to attend this programme, the furthest person while I was there, was a guy from Ireland, so people travel far and wide for this. I know from personal experience (being outpatient) this hospital has patients from all over the country, due to it being one of the top hospitals in the country, so I knew I was in good hands.
My symptoms intense migraines, dizziness, fatigue (more so), slurred speech, slow responses if none at all, memory loss, more anxious, numb, confusion so bad have no idea where I am, who I’m with, this is where dissociative seizure would come in, I’ve had times going outside in my pj’s, nightie freezing cold not knowing why I’m out, in complete daze, that’s symptoms of dissociative episode, the confusion can be so bad, I have been told called my carer mum, even the nurse at hospital, takes time for me to even know my pets names. Location, time, day, people can be one just blur to me. These are just examples of things I live with. The shaking, I can bang my hand really hard, other body parts too, I sometimes slap myself. Yes the non epileptic seizures does resemble someone who has epileptic seizures, mine full body shaking, it can be violent as my body bounce around hitting things. Like I said it’s something that’s not just scary for myself (not so much now, as I’ve lived with this for years) but the person around me. The best thing is for the person NOT TO PANIC as that doesn’t help, I know it’s hard, there is tools on how to help.
This is where being in hospital, educated me on my condition, learning more how to tell someone that I feel one coming. What is FND, how where what…. It can strike at ANY time of your life, young or old, healthy or not, it can come in small spout and that’s it gone forever, or it can be life long thing. The common triggers for it, of course like anything SLEEP (lack of it, or too much of it), STRESS, FLARE UPS, PACING yourself incorrectly learnt more about how to do it correctly in hospital (making it lifestyle choice, not just quick temporary thing, as I suffer with chronic illnesses, this is my life, so you have to adapt, and how to work around my flare ups, not beating myself up if I can’t do more on that day, week) forgot to mention I’ve had pain management in the past, so some was refreshers for me, some was learning thing. Learnt some exercises catered for my needs, looked into my anxiety. There was goal setting started from the time I was in hospital, however I prefer to speak on them once I’m meeting them more, but that’s ongoing thing not quick fixer.
What To Do
If you see me acting differently, from the norm, I’m not engaging in the conversation even when directly asked a question, my eyes are rolling, my body movements are different, or I’m not making any sense at all when talking, keep repeating myself, all signs showing I could be going into dissociative seizure/non epileptic seizure. How you can prevent it going into full-blown one. Not always. However here is summary of ways to help.
Number one ALWAYS make sure I’m in safe place, if outside I’m strapped in my wheelchair. No wheelchair, a car seat, chair, bench somewhere where my body has support to lean on. In doors at home, the bed is the best option, or the sofa. If laying down, make sure I am in the recovery position. Tell me I am safe.
SENSORY GROUNDING- Get something for me to feel on that has texture, (when out, don’t have objects around) if I’m wearing jewellery make me touch my bracelet, or my necklace, make me take notice of how that object feels, smoothness, rough etc.. Drop it in conversation about the surroundings, so I can focus on where I am, what colours are around, buildings, shops, vehicles, people, animals, engage with me, have patience if takes me longer to reply, if I’m not able too, still go ahead, just so I know I’m safe.
MENTAL GROUNDING- Ask me something for example my favourite meal, snack, music but get me to describe it in great detail. Or get me to count how many letters are on the bottle, how many signs if outside, just pick something that would make me have to think, that isn’t impossible for me, otherwise end up being grumpy for getting it all wrong.
CALMING TECHNIQUE- Breathing exercise, hold your breathe in, hold in for couple of secs (stomach sticking out when breath in) exhale out, do that couple of times.
Also distractions like put TV show on, talk to me, if travelling put music on in the vehicle, or if on public transport (put headphones on me, I’ll listen to music off my phone). Only alert medics if injury is suspected. If any seizures has happened just allow me time to rest, whether that’s napping for a bit, or laying down for a bit in silence. Check up on me now and again, if you have to leave me and I’m alone, make sure my Holly (dog) is there with me, if neither is possible. Message me to check up, might not be able to reply but you can see when the person has read the message if on WhatsApp, Facebook Messenger and other social media platforms. Of course this is summary, I was taught more techniques from the programme, what I can do, that might help me. Also don’t be afraid to ask me ‘how are you’ if I’m shaking a lot, twitching are you anxious or do you feel like it’s your FND’. This is one of the things put me off meeting new people, or people know of me (the pre chronic ill me), as it’s something I have notify people for safety/obvious reasons as it can happen at any given time (it can, doesn’t mean it will). However having this blog post as guideline, will help. And hope for others who suffer with this too, you are not alone, don’t have to have the exact same symptoms as forgot to mention earlier there is long list of symptoms, effects people in so many different ways, I want to bring awareness somehow, as for so long I felt completely alone with this particular diagnosis, meeting others with the same thing, came as huge relief (this programme I attended). I hope to meet more through here, social media. And if given opportunity to attend the same programme I was on (if in the UK) go for it, Inpatient or Outpatient gain the knowledge, speaking to experts in this field. I do separate post on how I got diagnosed, as it took very long time, as have been asked.
Let me know, if wanna know more in comment section, can you relate, hope you like the mixture of my blog, bringing you little bit of everything.