Samuel has always been one of my main carers. Since he started taking on that caring role, he has enabled me to live within the boundaries my M.E. has given me. He helped me thrive rather than just survive.
But now he is sick, really sick, and it sucks.
One of the chapters in my third book, A Girl Beyond Closed Doors, was about what happens when the care-giver gets sick, but that was about a case of severe tonsillitis, and it lasted a matter of a few days.
This time round, Samuel has needed oxygen for days as he can’t maintain his oxygen levels. He is in hospital, he can barely eat or drink and is spending most of his time stuck in bed.
I think what’s difficult is that we have found out that there will be no quick fix to this particular bout of ill heath. He is now chronically ill, and his conditions are really disabling him.
He has been complaining of being really short of breath for a couple of months now. He has been to and fro from the doctors and a&e. No one has known what to do. The doctors have been concerned because his body isn’t fighting of infections like it should do, but it turns out that is because he’s been aspirating into his lungs for a long time due to reflux, and now the damage has been done.
He needs surgery, but he’s not well enough for surgery. The surgery would help prevent damage, but his breathing makes it not safe to do the operation. It’s a catch 22. A constant vicious circle.
So now I’m suddenly having to make lots of decisions. I’m having to push my health to the extreme because the doctors won’t speak to me on the phone. I’m having to force myself to get to the hospital to speak to them and explain basic things like if he can’t have enough drink or food, then he needs intravenous fluids or he’ll become dehydrated.
I’m having to look after our two children. I have to listen as my four year old cries every evening that’s she’s missing her daddy.
I have to put their needs above mine, knowing that the crash is inevitable and the fall out will be costly. But what choice do I have?
I know that the mould and damp is making Samuel’s health (and all of us) much worse, but I can find no way out of the situation. The respiratory doctor has confirmed that it will be adding to the problem due to the length of time he has been in the damp house.
Even when he does come home, if he gets another cold, then this will happen again. It will flare, and our lives will be turned upside down yet again.
I know I’m incredibly privileged to have the family support I do and to have my mother-in-law staying with me. But this feels like a lot to deal with. The stress levels are constantly high.
Even whilst writing this, there has been another backwards step as I’ve just found out that Samuel’s oxygen levels have dropped again. He is now on eight litres of oxygen.
It would just be so nice if I could have some form of break from this rollercoaster. I am holding onto the light at the end of the tunnel.
Soon I will be back fighting, and I will rise from the flames, like a phoenix from ashes. But for now, it is hard, unbelievably so, and I’m just trying to keep on keeping on the best I can.
I am so sorry Jessica that you are all going through this. I’m incredibly sorry to hear of Samuels health struggles and that there isn’t a quick resolution.
Re your home, if it’s not privately owned then look to the landlord or whomever to deal with the damp problem.
If anyone can loan you a dehumidifier or two will really help and although require electricity, they use very little. We once had a basement so had one on permanently and I used to empty it every few days.
Then of course look into sickness pay & PIP etc to help with your finances but I know it all takes effort & time.
I was only having a conversation with my husband on Friday night about what happens if he gets ill. I’m concerned about his level of fatigue and stress as he is one of my main carers. It’s one of our worst fears I think not just because they look after us but because we can’t look after them the way they’d need.
So get friends & family to help with the chores and the children so you can rest your body for some periods. Easier said than done.
Thinking of you all and I do hope Samuel gets every available chance to get well again
Much love
Fiona.
xxx
My husband has been my carer….me with Lupus (SLE), fibromyalgia, osteoarthritis, osteoporosis and depression issues. 4 weeks ago, he had a massive stroke.. He’s being g discharged tomorrow, coming home with wonderful recovery. Well, one hand won’t work, his thinking isn’t clear, amongst other things. I do have support workers a few days a week but I am scared. What now? What happens 4days a week and who will be my carernow, and who will be his because I am not up to the task. 😢
Oh no, dear Jessica. I am so sorry to their about Samual. I hope that the Drs can get on top of his COPD very soon and that he starts to feel like his usual self again. I hope that you get the help that you need Jessica, as we all know from experience how our M.E works. You have shown such tremendous determination over so many years, Jessica and this has given you much resilience. Thinking of you all. Good luck on so many levels.
Sending healing hugs to you both, very sad to learn that Samuel is so unwell. I hope things can improve. R
So terribly sorry this is happening to you all.
Has Samuel had Covid? I know the damp problems can cause COPD but he’s so young.
You obviously need the damp situation rectified.
Could social services help? You can self refer I think. Failing that your MP, a letter from Samuels consultant?
Occupational therapists at the hospital may also be able to help so ask for a referral.
Good luck and I know there’s no quick fix but you will come out the other side.
Thinking of you all.
Much love 💙
Oh Jessica. It’s so cruel and unfair. My heart goes out to you all.
You all are in my thoughts. I hope that the doctors find a way to help Daniel and that something unforeseen happens to get you out of that damp, mouldy house. I wish you the strength to cope. I imagine you must feel torn in all directions right now.
Praying for you all♥️
Dear Jessica, We (Doug and I) are so sorry that your lovely family are going through such hell at the moment. We both have ME and Doug is my carer and we know the anguish when the carer gets ill and we have to keep going somehow despite the cost to our ME. But you have your dear little children to care for despite your own ill health and the anguish for Samuel right now. It must be so hard and we really feel for you. Nearly 40 years ago I had two children with ME and myself and my youngest were bedridden with it. I was in despair to say the least because my ex husband was little help and could be cruel with words. Yet, my kids grew up, outgrew the ME to the point where they only have it mildly now and are leading near normal lives with their own families . At the time of going through the hell fires, like you are now, I thought life would never be worth living any more, I was desperate, but hang on in there Jessica, a whole bunch of things changed as you can see and I have another partner now, still got the ME but we hope there will be better days ahead for you and Samuel. We are not religious people but we will be praying for you and Samuel as will many other people I am sure, we send you lots of love and hugs from Sussex.
Terrible situation for you all. How about asking your BBC local radio if they would get involved or local t.v. news. It would show them up. Just a thought
Mould really drains vital nutrients like B12 and iodine have you all had your levels checked?
Sorry Jess. You all deserve a break. Sending so much love
Ruth B
I’m so sorry this is happening. I am wishing your family all of the healing love and healthy vibes that I possibly can. Much love.
Keeping you both in my prayers and hoping that is soon home with you all
🙏💓🫂💓🙏
I am so very sorry to hear this, I too was promised my new husband would look after me. Over the years his health has declined and now I look after him.
Sending you all my love, encouragement and support, know you are loved and reach out for any assistance available ❤️
Oh Jessica and Samuel my heart breaks for you all life is just so hard thinking of you all xxxx
I feel so sad for you. It must be very difficult not to constantly feel why me. I hope that Sam improves soon enough for his treatment to start and that you can make some headway with the housing situation.
Overall I hope that this does not have too much of a negative impact on your health. Stay strong xx
I’m so sorry you and your family are going through this tumultuous time in your lives. It’s so heartbreaking to hear your story 💔 😢 we’re praying for a breakthrough in your situation. Know that you’re not alone in this. Sending love ❤️
Having to live somewhere that’s mouldy and damp must be so hard. I know I’m probably stating the obvious, but is there any way you could all move? Or have it all properly treated? So sorry he is so sick. Hope things will improve for both of you soon. Xx
So sorry you’re having to deal with all this! Living in a damp house is awful I’ve done it. Input ventilation solved ours as it was an old house.
This must be so difficult for you trying to deal with your own illness and two young children. Now you have Samual poorly . I’m thinking of you and your family . (I too have m.e ) .
Love Megs xxx