Jess Pampling Journey with Primary Progressive Multiple Sclerosis

I’m sorry I haven’t posted in a while. Life had been absolutely flat out. I spent the last month looking for houses. Travelling from Eumundi into Brisbane for inspections. Applied for over 150 houses, units and share houses. Finally got accepted for a shared unit in Brisbane.

So my body is absolutely and utterly exhausted. I have been having ore falls recently. My pain has sky rocketed due to not resting as much as I need to. My cognitive function is like a computer running on windows 95.

So I have just been trying to relax my body now. To catch up on much needed sleep. To replenish my body from all days of s**tty ass good. So just trying to take one day at a time.

I hope you all have been well and staying safe. I’m terrified of when the borders open and what that means to my family and I. I hope you all stay safe along with your families.

Much love, light and a tad of darkness. X # # #

🌹🌺💐🍀 Update. 🍀💐🌺🌹

I’m sorry I haven’t posted in a while. I’ve been trying to sort my life out. Sometimes I feel like I take 3 steps forward and then 2 steps back at no fault of my own… I’ve been struggling lately with my anxiety.. I also haven’t been well physically… Loss of balance, fatigue (which isn’t new), the damaged vertebrae’s flating and my asthma is so bad atm. Only because I’ve been naughty and haven’t been taking my prevention spray…. I have my neurologist appointment on the 5th but won’t be able to do much as I have missed my MRI so will have to have one done before the end of the year. I’m suppose to have them done every 6 months but I’ve been naughty… So need to contact psychologist to book an appointment… I also can’t forget any injections this week… Other than that I’m just trying to stay happy and positive…

Much love, light and darkness # #

Okay so not many people know this. I had something really awful happen to me last year during my catatonic breakdown. I went through some really fu**ed up s**t at the hands of so called family.

So for me leaving the house is such a big step for me. Because I don’t like leaving my comfort space much. Only really if I have to. So over last week I have been trying to walk every day except for the days that I’ve burnt myself out.

I even spent 3hrs watching the TV today and doing my diamond paining which is another big step because usually I don’t like leaving the bedroom during the week. So I’m so proud of myself for getting out of my bubble.

Next step is to actually travel by myself for something other than appointments .

Good morning beautiful souls….

I’m sorry I haven’t updated anyone in a while. Honestly my depression and social anxiety got really bad… Again… I’ve just came out of a relapse… Not that I go into remission anymore…

So my new symptoms are that my legs from the knees down feel like they have concrete attached to them when I walk… I already had problems swallowing liquid but now it’s a little worse (goes down the wrong hole and I choke) due to this I have a wheezy chest…

Since last time I posted… I’ve been on Copaxone injections now for almost 2 full months… I have problems finding a place to inject as I can use my arms or stomach as the reaction is too severe. So my butt checks and quads only… The burning sensation from the injection is bearable now and I don’t need a heat pack..

Side effects of the injections are I’m bruising a lot easier now. It’s also been almost 2 months since I started the Bi-Polar and anti seizure meds… I’ve noticed a lot of my ticks have stopped or there not as bad… I have also noticed a difference in my mood/depression. Also I’m not having major mood swings at the moment highs/lows/manic.

So the medication mixture at the moment has really had a positive affect on my mental health. So I’m waiting on a Neuro Psychiatrist for a diagnosis of Bi-Polar or BPD. Or something along those lines. I’ve always felt like I was different but just put it down to being empathetic but no there’s other things going on as well.

I’m not afraid anymore to say “hey I’m Bi Polar” because I’m getting the help I need. It’s just part of who I am and that’s okay.

The only other thing going on at the moment is I’m having more falls. I fell and hurt my back the other week and I fell today whilst walking and hurt both my legs 🤣🤣 but at least no one seen me so it’s okay lol…

Much love, light and a dash of darkness yo you all # #

I’m struggling.....

I don’t usually let people see me struggling. I guess it’s another reason why I hide away. So people only see my good days and they don’t know me during the bad days. Only a few really close people have seen me on my really bad days.

So I’m struggling. I had my 5th injection last night. My body is struggling. My butt hurts, my body hurts, my head hurts, I’m fu***ng cold and exhausted, my psoriasis is flaring so I’m snowing and patchy, my asthma is bad so I’m squeaking like a fu***ng dogs toy, I’m just not coping atm.

But I am thankful for the roof over my head, the food in my belly, the oxygen in my lungs, the beating of my heart, the laughs, the funnies, the blanks, the stutters, my legs. My partner and my close friends who love me.

Thank you for dealing with my s**t and loving me anyways # # #

Day after Copaxone injection

My quad is a bit tender. I’m feeling a bit tired today and my muscles feel weak. I’m not in ws much pain over all as I have been but it could just be a good day.

Going to try and go for a little walk with Esh as I need to keep active to keep my depression and stupid thoughts in check....

Will come home and rest a bit.. I have let myself go and feel I need to get back in shape as it’s a bit embarrassing for me. I know Matt still loves me and nothing has changed there. It’s just my own self esteem that’s taking a bit.

So whack myself back into gear and just get a bit fitter so I don’t feel so horrible about myself....

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Just help me spread awareness.... MS isn’t just for older people.... It’s affects the young too....

Neurologist Check up

So went to my Neuro appointment. She was absolutely lovely. Very understanding and very patient. I had so many blanks I almost broke down because it was so frustrating.

Anyways need to do an MRI, referred to urologist, Neuro psychologist, Pain team and MS Queensland for an NDIS package. Put on another medication to hopefully help with the pain and wafers for my migraines. Starting Copaxone injections to just bandaid it atm until we decide on something more aggressive.

My eye sight has gone to s**t but with funding with be able to afford the glasses I’ve needed since 2015. I’m honestly terrified of starting any form of treatment as it kills the immune system. So I have to be so careful. Last time I was on Copaxone I ended up flaring my asthma and got bronchitis for 7mnths.

Not to mention I got diagnosed with pleurisy (an infection in the lungs that causes pain) in Dec but was never given antibiotics or a Preventative for my asthma. Only just got it on Friday ffs. I could have ended up with Pneumonia.. Hense why my MS is flaring because my immune system has been fighting that ffs.

Anyways at least I’ve got something now. Just have to suck it up and be good. Do my injections. Stay warm and away from sick people. Look after myself and wait for all the appointments lol lol....

On a side note. I’ve had social anxiety were literally I was too scared to leave the house by myself. I stayed home for months not doing anything but sleeping and watching YouTube or Netflix. Some days didn’t even clean the house which is not like me Ms OCD.

I travelled all by myself, no anxiety attacks, even got lost and my brain felt like it was going to explode due to the migraine I’ve had for 2wks that flares up with sunlight and noise. I did it though. I’m so proud of myself and I even had a conversation with the DiDi driver. I only have one friend who I’ve seen twice since Feb. So I’m taking big steps now instead of baby steps.

Thank you all for your continued support and kindness. Much love and light # # #

🌹🌺💐🍀 No doctors 🍀💐🌺🌹

I don’t like doctors. I haven’t had a proper Neurologist appointment since 2017. I had a Lemtrada infusion (which all treatments are chemo based but Lemtrada is on of the most aggressive treatments). Anyways after the infusion I was so weak. I ended up in a wheel chair for 6months because I was in so much pain and I just couldn’t walk more than 500ms.

It took me so long to get my strength back. So I refused to have the second infusion. I felt like I had been let down and I wasn’t very trusting of drs to begin with. You see it took 7yrs to get diagnosed because drs would just put my symptoms down to depression or anxiety. I had so much tests done between 15-17.

Blood tests, ultrasounds, CT’s and the list goes on. I was basically told at 17 it was all in my head. So I gave up. By the time I was finally diagnosed I had so much damage done I didn’t even need a lumber puncture to confirm. I had between 10-20 lesions in my brain and unknown amount in my spine.

I felt like I had been failed and honestly thought I had been handed a death sentence. I had no support what so ever. My husband told me “toughen up you’ll live” literally as we walked out of the appointment. My mum stopped talking to me for 6months because she couldn’t cope and my Dad refused to believe the diagnosis.

So I had to deal with it. Not to mention I had a 18mnth old I had just recently watched fight for his life for the first 6months of his life due to a Congenital Heart Defect. I had gotten sick but I had put myself on the back burner to look after him. I basically laughed at the dr who said it could be MS. I thought I was too young.

Nope. I was so wrong. So my anger towards drs grew. Even the neurologist I started seeing would put symptoms down as depression and anxiety. I got so tired of going to appointments to just be told “that’s not MS related” his an antidepressant. I was against medications for so long.

You see my first symptom was the lovely MS hug. It’s a lovely symptom wear it feels like there’s a boa constrictor wrapped around your chest. I had trouble breathing and the pain was so bad 70/10. So hense why they were like it’s anxiety. I’ve suffered with anxiety attacks but I knew it was not anxiety. It was more pain then hyperventilating.

Slowly over the years the symptoms started piling up and I would just ignore it because “it was all in my head”. Til not long after I lost my second son I started having a migraine that just didn’t go away. Once it had gotten to a month of the migraine I started getting shooting pain when ever I moved my left eye and it would go up into my head. It was so painful.

Then one day I woke up and I was like my vision is blurry but I had to work. So went and did the job that was booked in and when I was driving home the pain was so bad I started balling my eyes out. Went to the drs who sent me to the optometrist. At the appointment I was told I needed to go to the RBWH immediately. Well I couldn’t. I had my son and my partner was working so had to wait.

The next day I ask my dad to drive me the 50mins because I didn’t want to drive myself. So got there. They had to call the specialist in because it was a Sunday. Then I was admitted awaiting an MRI. Was told it would be the next day. Anyways waited 5 days and I discharged myself because I had a baby to look after and hubby wasn’t coping.

So then waited a couple of months for the MRI. Then bam. I seen my brain light up like a Christmas tree... that’s my super power...

To all the over-thinkers,

I feel you and I know what it’s like.
You overthink all day every day. You think about the text you sent that hasn’t gotten a reply. “Did I say the wrong thing”. “Was I to harsh.” You think about are you doing enough. “Do I need to show my SO more love, affection ? Do I need to be more!”.

What do people think when they stare at me? Are they judging me! Should I change my clothes or hair so they won’t stare! Is my SO going to leave because I’m so damaged and needy! Am I being to much of an as***le! Am I boring mabey I should try to be happier and funnier!

Why can’t I do better to bring my family back together! Why don’t they want to talk to me! Because your a loser and ruined it with your self destructive behaviour and drinking problem now they don’t want anything to do with you. Am I enough! Why can’t I just fix my s**t!

Why do I overreact and be so jealous! Why do I have commitment issues! Why am I do not exhausting! Why am I too much for people! Don’t reply so soon they’ll think your over bearing!

I feel you my over thinkers. I over think so much sometimes I literally give myself migraines. I don’t mean to be over bearing or needy. I just want to make sure your not suffering alone!

I don’t want you to ever feel like I do and if I’ve hurt you, I’m sorry 😞 I never meant to. I’m sorry I gave up on you when I was spiralling out of control. Just know I love you and I’m so sorry. I feel more than you’ll ever know and what ever pain I’ve inflicted in people I feel 10 fold, trust me.

I’ve let my pain and everyone else’s pain destroy me for so long. Some days I don’t even know who I am any more!

Just know I care deeply and love whole heartily and I’m sorry 😞.

🌺💐🌹🍀 Social Anxiety 🌺💐🌹🍀

If you know me. You know me as the strong independent woman that had no fear of anything. Well a lot has changed in 3yrs. I am a shell of what I use to be. I’m terrified sometimes of even leaving the house. I know this is going to be embarrassing for me but I have to share my story properly.

I use to go out with friends and family. I use to take my kids all sorts of places and I use to walk daily. A lot has changed. I didn’t have my kids so I just started drinking from the time I got up to the time I went to bed. Then I cut back a bit. Started looking after myself. I was keeping in contact with the kids but I had so much on my plate.

My brain just snapped and shut off. I wasn’t there. Matt had to look after me. Put pads on. Shower me. Everything. Then I went through even more trauma. When I got out of the hospital I started smoking and drinking again. I wasn’t coping at all. In all honesty I should have stayed in there longer but I just wanted to get out.

When I got out I tried to start walking again and having some sort of life. It was going okay for a bit but then I went down hill again. The hardest thing for me is not being able to see or speak to my kids. It breaks my heart but I know I have to focus on myself. I need to get better.

So I can be a better Mumma. I need to get myself back in shape because I let myself go. I need to focus on my mental health and social anxiety so I can function properly. Because at the moment it’s just exhausting. Being empathetic doesn’t help. It feels like being I a crowded room where everyone is just shouting at once and it does get exhausting and I guess that’s the reason I shut myself away.

Just to heal. To gain back my strength to be able to help the world again. I have never put myself first ever. I’ve always put everyone else above myself. I need to stop because I end up hurting myself because not very many people are like me. I need to stop and just breathe.

Thank you for walking my journey beside me.

🌺🌹💐🍀 Judgement. 🍀💐🌹🌺

I know I haven’t been the kindest human being to some but to others I gave the world. I have wiped tears from those who in turn stabbed me in the back. I have held those who have hurt me the most. Yet I still do not wish them any ill health. I try and be a decent human being.

I try not to judge others as myself am tied together with flaws. All I ask is you do not judge me. You do not know me you see. All my life I have his behind a mask. So you could not see the pain behind my eyes. You have not witnessed the days tears fall from my eyes with any words or sobs.

You have not heard me sob so bad you thought I was dying. You have not witnessed the struggle I feel just to get out of bed. You do not know the pain I am in day, day out. You do not know how hard I try just to live. I try and be a decent human being.

I try and help those who are suffering alone in their darkness as I know what it is like. I try and spread my love because I have enough for a small tribe. I have lost so much some days I don’t know how I have made it. I just did. I didn’t have a choice. Don’t get me wrong I have tried to end it but yet I’m still here.

I was put on this earth for a reason and if you don’t like, that’s okay. Do not take advantage of my kindness. Because you think it’s weakness. Do not accept my love and then stab me in the back. Do not offer me support and then tell me I’m too much. I have been abandoned so many times. So please don’t abandon me.

I have trust issues, I need to extra reassurance, I lash out but not intending to hurt you. You see I have been broken so bad I don’t know how to accept some things. I flinch because not all the hands that have touched me have been kind and I jump at loud noises because it’s a trigger.

I feel like I am broken beyond repair but I would rather help people than let them suffer alone. So before you judge me. Take a walk in my shoes for a day.

🌹🌺🍀MS Relapse and Acceptance🍀🌺🌹

I’m sorry I haven’t posted in a while.

So the past week I have noticed my body is struggling. What do I do. I push myself harder. Why? Because I haven’t accepted my MS. I got diagnosed almost 6 years ago after suffering symptoms for 7yrs before that.

I didn’t have time to accept it. My son was just a baby and had health issues of his own I was more worried about. I was a wife who looked after her husband and kept the house and bills in check. I came last and even then I put everyone else’s above myself.

After I lost my second son Lincoln I went into a really bad depression. I pushed everyone away. My marriage was falling apart at the seems and I became toxic and self destructive. I ended my marriage by cheating the first time I ever went on a holiday by myself.

Then stupid me entered another relationship which was toxic from get go. I didn’t want to be alone so I didn’t let go until to much damage was done. Even though I swore to myself I would never put my babies in through what I went through as a child.

Then I fell pregnant with my baby girl and I didn’t let myself enjoy the pregnancy because I was so frightened I would loose her. Then when she arrived I almost died and ended up with really bad PND. Which I destroyed myself with.

My drinking got bad but I tried not to drink around the kids. I let my MS get out of control because once again I put everyone first and once again my marriage fell apart. I didn’t even get to say goodbye to my babies when I left.

Then I just spiralled out of control and I fell further than I had before til I hit rock bottom. I stayed there. I didn’t move. I just layed in the darkness waiting for my time to come.

I tried so hard to reach out to my babies and than I went catatonic and lost all contact. Now I haven’t talked to my babies since June 2020. I miss them with more words can describe.

I’ve ruined all my friendships/relationships. I even tried to push away the one person who hasnt given up on me. My beautiful partner. Who has done so much for me.

But yet here I am. Just struggling to survive. Not because of me this time. Because I have pushed myself out to far and my body’s saying slow down. I accept you MS. I accept I’m not a normal 27yr old. I accept all the bad days, migraines, the pain, the brain fog, the falls. I accept it all.

What I don’t accept though is giving up. I’m not giving up. I can’t and I won’t. I laid in the darkness for long enough. I’m fighting and I will live instead of surviving. Just at my pace.

Just at a pace that’s good for me and I everyone else. Just please be with me because I’m harder on myself than anyone else. Some days I feel so alone but I have no one else I blame but myself. Because I pushed away everyone that loved me.

Because I didn’t want them to watch me decline. I wanted to suffer alone. I don’t want to suffer alone anymore.