Had to share this- all my life I have been told, being sad is bad, its weird, I’m weird, why can’t I just be happy? I should be so grateful for what I have. Sad is bad. And now I find myself creating a facebook group to promote positivity- thinking I am helping- when really- we should be encouraging people to FEEL all their emotions. That is what is healthy, that is what is real. Sometimes I think I focus so much on the positive because if I actually let myself feel my real emotions I won’t ever stop crying… it is all there bubbling under the surface. I can’t actually deal with everything. SO I smile and ignore it and I am happy and positive. One of the most positive people you’ll meet… It is hard.
Another sleepless night- this time with the littlest one- who woke up around midnight crying. She was complaining of some mysterious pain and squirming a lot, I changed her nappy and did a check around for anything unusual- nothing to be found. She didn’t have a temperature but was very upset so I had to bundle her downstairs as soon as I realised I wasn’t going to get her settled as easy as usual. I didn’t want her waking up her big sister or disturbing my husband even more than he already had been as he starts work at 6am and is back at uni and so has an especially long day to look forward to. Once downstairs she stopped crying and demanded we watch peppa pig, so we did- after 20 minutes I suggested we go back upstairs, and we did but as soon as she was put back to bed she started crying again, complaining of the mysterious pain again and squirming again. I checked her nappy again, checked her temperature and everything was okay but as she is quite (very) loud we rushed back downstairs where she settled pretty quickly- this pattern continued until after 4am when she had exhausted herself and myself. I plopped us both into mine and my husbands bed where she settled on my head- literally on my head. My husband went to work for 6 and at 7 my other daughter came in looking for us… needless to say I was already in a zombie like state.
We got our car back after my husband fixed it (see previous post) and he parked it last night behind my car- (which I take my daughter to school in- therefore blocking my car in the drive) I looked out and sighed as I realised I would have to reverse his car, move mine out then move his back in and then move mine back in behind his- I didn’t have the energy for all this! I know he always walks to work but I wished this morning he had just taken his car the 10 minute walk!! As I searched for his key it slowly (because I was not switched on this morning) realised his key was missing, I checked all usual spots and then all the unusual spots then thought… maybe the key is in his coat pocket… the coat he has taken to work…. I tried messaging him and ringing him and emailing him… no answer… as time ticked on and I was getting nowhere except frustrated I started to message other people who might be able to help- but they weren’t answering either- eventually as 9am approached I rang the school and explained we would be late… Then I started to worry the key was sitting somewhere really obvious and I just couldn’t see it because I am so tired- that would definitely be the worst!! I kept messaging people and eventually my mum came to the rescue. We got to school an hour and a half late… on our way home my husband messaged me to say he had the key- I was relieved more than anything!!
The school must have me down as the worst mother of the year- my daughter has been off sick more than most, with chicken pox, flu, bronchiolitis, snow days, I think she may be off at least once a week at this stage… and today, when I got her home from school I noticed 2 strange little markings- one on her thumb and one on her inner thigh- I do not know why because I have no idea what I am talking about but I immediately thought ‘ringworm.’ It is one of those words in my psyche and I have no idea what it is or where she would’ve gotten it but I was pretty sure it was ringworm. Off we went to the nearest pharmacy and yes- it is indeed ringworm… it is pretty contagious- meaning she will most likely have to be off school again!! I will take her to school in the morning to make sure and to show them the evidence in case they think I am making all this stuff up!! So- how do I cope with a day like today- well I am currently eating a block of cranberry and wensleydale cheese- my stomach is actually sore from eating this cheese and no doubt it will all come back to haunt me tomorrow but right now I need this cheese..
if there was ever any doubt that I am an emotional eater, the cheese has testified and I have been found guilty as charged! nom nom nom… ouch!
(more about Calamity Gail) Yesterday I got to work and went to pay for parking but I had forgotten my purse, so I rang my husband and he parked my car on one of those app things, (this was after 5 panicked calls, many, many, messages to his work phone and personal phone) I got to work and must’ve left my phone in the car because I couldn’t see it in my bag- I emptied my bag twice, my manager came in and I told him about my morning mishaps, he wasn’t surprised as I am Calamity Gail, when my lunch break came I set off to go get my phone lifted my handbag and my phone was sitting right there! (My manager laughed and asked how much sleep did I get the night before) I went to get some groceries and I left them in the car on my way back to work ( I did that fancy get money in an emergency thing through mobile banking thing) when I got to the car- there was my purse- just laughing at me! Are the fairies messing with my head? or is my head just messed?
I have mentioned that my husband is doing his Masters as well as working full time. He has been off from uni since before Christmas and has all this spare time. He has now decided he is a ‘handy man.’ He never had any inclination for this kind of stuff before- he would rather pay someone to paint or replace a car part etc- now- with all this spare time and energy he has invested in tools (to save us money) He has taken to nailing bits of wood into other bits of wood. The kittens scratch post was sabotaged by our 2 year old (her and the kitten have a love hate relationship at the minute) now there are so many nails in the scratch post that it is indestructible- if not a little unsafe. I had put together a temporary pole thing to hold empty clothes hangers- I came home from work and it is now permanent. He fixed the upstairs toilet – it was a job well done. He is kind of adorable walking around trying to fix everything before he starts uni again- adorable but menacing…
Our car needs a new battery so he Youtubed how to put in a new battery- simple enough I’m told and it is done- (I’m getting more and more impressed)
Now the oil filter needs changed- he bought a socket and wrench set (to save us money)
Wednesday morning I notice the bonnet of the car is open… but he is going to work soon so couldn’t possibly be attempting to change the filter now. He comes in and says he doesn’t have time. I am relieved. Off he goes and off the girls and I go to my mums! (In my mums I eat ALL THE CHOCOLATE- oh my goodness- my mums house is always full of goodies and I don’t even try to resist- the girls and I feast of chocolate- it is soooooooooooo good!!! Thanks mum!!)
As we are leaving I notice her whole yard is covered in oil!! I call her out to show her and we both look at it for a minute – more than a little bemused- where is it coming from? Then slowly it dawns on me- the track of the oil is that exact same track I took when I came in and reversed and parked up… I say this to my mum and I ask her to look as I pull the car forward- sure enough there is a huge puddle of oil underneath it. I am about to panic- is this flammable? will the car explode?? (Imagination- come back!! ) I get the girls out of the car before it explodes and back into mums. Is it coincidence that my husband was looking into the engine this morning and now there is oil everywhere? He did say he didn’t have time to do anything so- benefit of the doubt- it is a coincidence. Mum leaves us home and I message my husband to tell him what happened- he rings me straight away- turns out he did have time to do something- so three days later and we are without a car- he tightened something and nipped something and now oil is leaking and it needs a new part…(thank God he bought those tools to save us money) to be honest I feel awful for him. He was trying so hard and not only did he break that car but he destroyed my mums yard in oil (luckily they are very good people and they cleaned it up without even complaining – to our faces anyway) He was adorable.. but dangerous.
The best news in all this is- my husband starts uni again next Tuesday and will down his tools. (Until Easter)
My husband is away in Dublin, he stayed over last night with his mates which means I had a lot of running about to do this morning (no more than usual but on a Saturday it seems unfair)
I am up at 6:30am- showered and ready and then get the girls up- who are 5 years old and 2 years old- they refuse to get up- every other Saturday morning in LIFE they are up at 6:30am- this morning its 7:30am and I am banging around outside their room, I have the hair dryer on-i’m singing loudly- not a peep! Eventually I go in and wake them- I go for the little one first and I get my morning snuggles as she is still half asleep on my knee- morning snuggles are GLORIOUS!! The girls are still so toasty from being in bed and they are half asleep so I get full snuggles, they just bury themselves into me- Our older girl gets up and I quickly go in for snuggles before she wakes up too much– not that she does!! She is 5 and so tall- she will be overtaking me in no time- her snuggles are a bit harder because she’s more than half the size of me- they are still GLORIOUS- she likes a good squeeeeeeze!! We are really running late now but the snuggles are so worth it!! She needs to stretch into crazy shapes for about 20 minutes. I can not get her to get dressed. I feed the kitten while she continues to stretch. The little one is dressed and ready to go but demanding water- it is a human right after all! water it is- she has only turned 2 and usually can drink water unsupervised- this morning- she can not. She has managed to drench herself in water- I did not give her that much water- I suspect she was at the water cooler when I was distracted with the kitten-clever- she needs changed! Begging my 5 year old to get dressed now, I just takeover myself. done- 5 seconds flat. Almost out the door- I spot the clean pants I was to put on her- she has no pants on under her leggings- this will not do! shoes and leggings off, pants on, okay- good- ready to go- pack the car- girls into their carseats- each demanding different songs already (‘let it go’ and ‘Mika’ were favourites but now it’s ‘Let it go’ and the ‘Moana’ cd. I run in to the house to do a last check- make sure the kitten has access to her litter tray while we are away, lights off, doors locked, coats in the car- as I am leaving I can smell the kitten definitely needed that access to the litter tray- THE WHOLE HOUSE STINKS! At this point I am frazzled- well- I woke up frazzled so I am beyond frazzled now, I still have to drive to the grandparents to drop the girls off and be in work for 9am. I can not lift kitten poop right now… I’m in the car- the ‘Moana’ cd is already in so it wins, luckily the little one loves it too- usually it is ‘let it go’ or nothing.. I had to borrow my dads car because my husband broke our car trying to fix it… more on that later. Traffic isn’t too bad we are driving and we are singing
‘Long as I can remember, never really knowing why
I wish I could be the perfect daughter
But I come back to the water, no matter how hard I try
Every turn I take, every trail I track
Every path I make, every road leads back
To the place I know, where I can not go, where I long to be
And no one knows, how far it goes
If the wind in my sail on the sea stays behind me
One day I’ll know, if I go there’s just no telling how far I’ll go…….
We get up to the grandparents in record time, I unload the kids and the carseats and the nappy bag and their food- oh wait- no- I left the NAPPY BAG AND FOOD AT HOME!!!! seriously- nappies- I do not know what to do- we all look at each other- then Grandad says to leave the key and he’ll go get the bag- okay… (BUT THE HOUSE STINKS OF KITTEN POOP) okay- off to work I go- Getting into town I turn into the carpark and there are the police- I dunno about you but when I see police I immediately feel like they are after me… I park up- (right beside them so that I don’t look guilty) As I get out they come over to me, I am actually under arrest aren’t I? ‘just to let you know your reversing lights aren’t working’ (why did I park right beside them?) ‘okay- thank you- it’s my dads car, waffle waffle waffle’ (shut up!) I run and get a ticket and run to work- its 8.59am- I have actually made it to work, but now I am exhausted and want to go home!
I have been researching FND online-and still I have no clue about it. I joined several FND groups on Facebook. I followed a few peoples comments and stories to try and see if their stories resonated with mine. I don’t know if I joined the WRONG FND groups but these groups were not what I have been used to. In The Wahl’s groups everyone was so positive- despite being wheelchair bound or in pain. They were taking action and they were POSITIVE- you almost got a buzz off these people, they inspired you to get up and do something- To fight on!! To Keep Fighting. The FND groups I joined were the OPPOSITE of this. I don’t know if it is because FND is so… ambiguous – maybe these people in the FND group are struggling mentally because they aren’t being told definitely what is wrong- but every single person who posted- over 3 groups that I joined- were struggling- really struggling to be positive. They felt they weren’t being taken seriously- by family and friends and even professionals- one guy was at a pip meeting and was told he was ‘talking nonsense’ there was nothing wrong with him… Imagine if you have all these symptoms- some wheelchair bound- and your family and friends don’t believe there is anything wrong with you and even professionals say you are lying- well that is going to have a serious effect on your mental health- and you won’t get better. The invisible illness made even more invisible by its ambiguity. If you are diagnosed with an auto-immune disease- you know the problem, your family knows the problem, your Dr knows the problem and you are taken seriously. Okay so it is still mostly an invisible illness and strangers will probably judge you when they shouldn’t but you have the support you need most. The other difference I noticed- and this is controversial- the people in the FND groups seemed to have given up hope. They weren’t taking action. They weren’t exercising or watching their diet. Many of them seemed to smoked- every photo they were smoking, many of them were overweight, they drank sugary drinks like cocoa cola. I am not judging- I know my diet is not good all the time and I would like to make it clear that this was just the FND groups I JOINED. This is not about everyone with FND. When I thought I might have MS I changed my diet. Food is medicine- I never smoked in my life, but I imagine it is not very good for you- I also know how important exercise is- although I struggle to keep motivated. I know this is probably a catch-22 thing- they aren’t being taken seriously so they give up- and they give up so they aren’t being taken seriously. I know some days are HARD- and I KNOW I AM LUCKY in that my symptoms have not left me in a wheelchair or blind. The people in The Wahl’s group are in wheelchairs, and blind and I wrote about a lovely lady who died- right up until the end she was positive and she was fighting. She messaged the group on her way to hospital- scared but fighting. The people I came across in the FND groups- had given up- they were not fighting- so I left the groups- I couldn’t take on their anger and complaints as well as my own anxiety. Just now though- I have had a thought- I should’ve stayed- and been positive for them!! Maybe I should rejoin and bombard them with sunshine or would I just come across as patronising? Or would their negativity suck me in- I am already fighting my own anxiety- maybe I can’t fix everyone. I dunno- I just came away from the FND groups with less hope than when I thought I might have MS.
- FND is due to a problem with the functioning of the nervous system and thought to be the result of the brain’s inability to send and receive signals properly, rather than disease.
- FND is the second most common reason for a neurological outpatient visit after headache/migraine.
- FND is more common than multiple sclerosis.
- FND symptoms are real
- FND can cause impairment in quality of life that is similar to other neurological conditions such as Parkinson’s disease or Epilepsy
Taken from FNDHope.org
I have been trying to get my head around FND and honestly- I can’t. Is it a mental health problem? Is this my anxiety and worry manifesting itself physically? I have no idea.
I am assuming it is all to do with my anxiety. I think of myself as a positive person- I try to get people to look on the ‘bright side’, I try to cheer people up and keep them positive. But in my head I am in a constant state of worry- about everything. For example- My parents are over in England at the minute visiting my brother. They took the boat and then drove to his house. I was on high alert until I heard they arrived safely- I had imagined many scenario’s that did not end well for them. The weather was bad so maybe they came off the road, maybe a lorry driver fell asleep on the motorway while driving and crashed into them, maybe they fell asleep at the wheel, maybe a lorry had a blowout- the list is endless. As the day went on, I kept checking the time and getting more stressed, I eventually asked had they arrived safe- thankfully they had- but no-one told me! They were all relaxed having a great time whereas I was freaking out and wondering how to cover funeral costs!
I guess that ‘energy’ has to go somewhere.
I don’t send apples to the childminder for my children in case they choke on them. Then I found out she gives them apples anyway so I go to work and worry that the apple will get them!!
I’m driving and I worry, I lie in bed, I worry, I try relax in the bath and I worry. My imagination runs away with me.
Yesterday the girls and I were in the car and we were having THE best time, singing Let it go(Alex’s choice) and Mika(Eabha’s choice) the same 2 songs over and over, we were all singing (using that word loosely) at the top of voices- then I thought- well if the apocalypse comes now at least we are together. That was my ‘Happy’ thought.
This ‘anxiety’ must now be causing these ‘mysterious’ symptoms. Looking on http://www.FNDHope.org it seems anti-depressants are often prescribed (So it is a mental health thing?) I don’t want to be put on an anti-depressant. So I gotta fix this myself.
I know the saying ‘no rain, no flowers’ means without rain there can not be any flowers but today I feel like I didn’t get either. I didn’t get flowers or rain, I got nothing. My long-awaited neurologist appointment was today and he said that it is unlikely I have MS. He said he didn’t think there was any need for an MRI if I was happy enough to trust him, which I am, because he’s a neurologist! He said my nervous system isn’t working correctly but it isn’t a neurological problem. He did refer me to a website: http://www.neurosymptoms.org which is very interesting but A LOT to take in- here is the introduction to it:
Functional and Dissociative Neurological Symptoms : a patient’s guide
This website is about symptoms which are: • neurological (such as weakness, numbness or blackouts) • REAL (and not imagined) • and due to a PROBLEM with the FUNCTIONING of the nervous system, and NOT due to neurological disease. These symptoms have many names (including dissociative symptoms and conversion symptoms) but are often described as “functional symptoms” or “functional disorders” Symptoms like these are surprisingly common but can be difficult for patients and health professionals to understand. This website, written by a neurologist with a special interest in these problems, aims to give you a better understanding of these symptoms. It has no advertising and does not make any money for the author.
Obviously I am relieved I don’t have MS or any neurological problems but I am also deflated in that I was looking forward to having some answers- some validation even on my symptoms, now I feel like maybe I am just crazy- which is not a nice feeling. A ‘crazy attention seeking time waster’ is how I feel right now. I am trying to be positive- I DON’T HAVE MS! how can I not be HAPPY? – I know everyone with MS most likely wishes they didn’t have MS so I am grateful, for my babies, I am so glad. Now I just have to look deeper into myself and see how to fix these annoying symptoms. I need to get a grip of my anxiety as the Dr said it could be a factor. How do I do that??
I need an action plan.
My action plan is:
Complete 80 day obsession (A Beachbody program)
Meditate 3 times a week
Bath in magnesium at least once a week
Keep a diary about food, stress, symptoms.
Continue Gluten free, Dairy free and Sugar Free and lean more towards vegetarianism (now that I don’t have MS I don’t need to follow the Wahls protocol so strictly and you can’t be vegetarian on that)
Continue with my supplements and investing in some CBD oil- to help with my sleep.
I also need to work out a timetable and try to stick to it as much as possible because I need trained. I need a schedule. My head needs some clarity and structure to guide me through the fog.
I still plan on writing this blog as it is about my journey to health and becoming soul strong. I didn’t get any answers today but I will keep searching.